ABILITY Magazine Frankenstein by ABILITY Magazine

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Volume 2007 Issue 3 Frankenstein

5/25/07

US $4.95 Canada $5.95

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E DITOR - IN -C HIEF Chet Cooper

M ANAGING H EALTH E DITOR Gillian Friedman, MD

M ANAGING E DITORS Pamela Johnson Jane Wollman Rusoff

H EALTH E DITORS

E. Thomas Chappell, MD Larry Goldstein, MD Karl Gross, MD

E DITORS

ACCESSIBLE TICKETS — Disability Legal Rights Center AUGIE NIETO’S — Quest to Conquer ALS

EMME ARONSON — One Couple’s Depression Therapy

STROKE — Dr. Winstein’s Recovery Research

CAR WARS — The Struggle for Alternative Fuel

ROAD TO QATAR — Allen Rucker Reports

EARL BAKKEN — From Frankenstein to Heart-Brain Institute

IRAQ VETS — Healing on the Slopes

CHOP CHOP — Try a Raw Food Diet

ABILITY CROSSWORD PUZZLE

VIRGINIA TECH — Lessons to be Learned

EVENTS AND CONFERENCES

CROSSWORD PUZZLE — Answers

SUBSCRIPTION PAGE

Jim Baker Michael Bartley Harriet Cabelly George Covington Courtney Gale Linda Boone Hunt Gale Kamen, PhD Deborah Max Myles Mellor - Crossword Puzzle Allen Rucker Betsy Valnes Jacob J. Wascalus USC’s Dr. Winstein

C ONTRIBUTING W RITERS

H UMOR E DITORS Jeff Charlebois Gene Feldman, JD

W EB E DITOR Lisa Wells

G RAPHIC A RT / I LLUSTRATION Danielle Brown Leah Demeter Scott Johnson

P HOTOGRAPHY Road to Qatar

Columbine Goldsmith ABC Lee Woodruff Rick Stevens

T RANSCRIPTIONIST Sandy Adler

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Lisa Palmer Andrew Spielberg

PUBLIC RELATIONS JSPR Virginia Tech

T N E T N O

HUMOR THERAPY — Pet Peeves

A young Augie Nieto

Earl Bakken, Hawaii resident, preparing to lead the Aloha Parade

Dahvi Fischer Kanani Fong Eve Hill, JD Noelle Kelly Glenn Lockhart Josh Pate Maya Sabatello, PhD, JD Romney Snyder Lisa Wells

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NEWSSTAND CIRCULATION John Cappello

EDITORIAL

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PUBLISHER

C.R. Cooper ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2007 Issue 3 Frankenstein Printed in U.S.A.

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veryone should own a pet. A pet is more than a companion, it is something you can blame if you spill juice on the carpet or break a plate. And, it certainly makes a great scapegoat when flatulence is present in the room. Pets are an extension of what their owners are. Someone mean and ruthless might have a pit bull for a pet. A talk er may keep a parrot around. An ugly slob may pal around with a potbelly pig. And, who knows, a nympho maniac could very well have a rabbit for a pet. Show me what your pet is and I’ll show you what you are. A pet is always there for you. After a rough day of work, your pet will greet you at the door, circling and licking you… like Richard Simmons. This means “I’ve missed you, now where the hell is my food.” Unlike humans, animals aren’t picky about what they eat. If you place a bowl of Kibbles ‘n Bits in front of your lov ing mutt, it’s highly unlikely they will send it back to the chef because there’s a hair in it. Sometimes your animal is diagnosed with a life threat ening illness. You’re never really sure what the condi tion is but you do know that it will cost $800. The vet will always tell you there is a chance your animal will live because putting it asleep is only $80. Logic tells you for $800 you can get two cats, a dog and really good spa massage. The only thing left to do is tell the kids the dog ran away. “Shouldn’t we make up some lost-dog posters, mommy?” You scramble for an answer, “No honey, that won’t help. Dogs can’t read.” Pets can have annoying habits. A cat, for instance, will suddenly decide she needs to be in the next room. There was no Amber Alert or Tornado Warning coming across the TV but, for some reason, at this particular time in her life, she has to be in the next room. Dogs like to watch people eat. Nothing ruins a meal faster then a pair of beady, cocked eyes following every movement of a fork. These furry beasts really only drool so you will lose your appetite and hand them the plate. Stringy slob ber does wonders for the appetite. Dogs seem to have more annoying habits than other pets. A hamster never

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humps your leg. And when was the last time your gerbil drank from the toilet. All pets wake you up in the morning—usually ten minutes before your alarm goes off. That’s an hour of sleep depri vation per week. However, any pet’s biggest, pesky habit is going to the bathroom. It’s always the owner stuck with cleaning up the dirty deed. Someone ought to invent the perfect pet that never has to relieve itself. You keep it for two years, it explodes, and then you get a new one. Pets are fun to play with. A bone. A ball. A piece of string. These simple life distractions tell me that pets don’t have any bills to pay. Not only do they occupy the animal but these wonderful devices excuse you from household chores—like having to take out the trash. “I can’t right now, honey. I’m playing with Pepper.” A pet can comfort you. When that man hasn’t called you in three days there’s nothing more soothing then a having a loving cat cuddled up on your lap. A carton of Häagen-Dazs isn’t bad either, but it doesn’t purr. Pets help you escape from everyday problems. The credit card bills are piling up. You’re out of work. Your house is in foreclosure. These things are forgotten when a dog is licking your face—that is, until they repo your mutt. The main reason we have pets is that they are something in our life that need us. Appreciate us. Never judge us for guzzling directly from the milk carton. Yes, a forgiv ing, nonjudgmental creature. (You hear that spouse?) This is why it’s important to never teach the furry mon ster how to use a can opener. After that, you are of no use to them. But aren’t pets loyal? Yeah, right up to the time you open that front door. As your faithful pet darts off, you’ll be lucky to get an “I’ll be back for dinner, sucker.” Well, enjoy your day animal tracking. No mat ter, we need them. It’s nice to come home to something that can’t wait to see you… and doesn’t mouth-off like your teenage daughter, who, incidentally, was supposed to empty the litter box a week ago.

“Ham on a Roll”

by Jeff Charlebois

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ALL THE WORLD’S A STAGE, BUT HOW DO I GET A TICKET TO THE SHOW? Ticketing and Accessible Seating for People with Disabilities at Entertainment Venues

ow do I buy a ticket for an accessible seat? Why can’t I buy my tickets online? Where is the accessible seating? What if I want to buy a ticket at the last minute? What about when people stand up in front of me? What if I want to give my accessible ticket away to my friend who doesn’t have a disability?

Getting a ticket to a popular concert or sporting event is an accomplishment in this day and age. Season ticket holders, winning teams and sell out crowds make it difficult to get a seat. But buying an accessible seat can be an even more difficult ordeal that adds another layer of stress and time to the process. Owners and operators of sports arenas, performance venues, and ticket vendors at box offices and over the internet, along with people with disabilities and their families and friends are grappling with ticketing issues as well. The serious economic and legal hurdles that venues face are relatively easy to identify—ticket availability and purchasing, transferring tickets, and preventing fraud and resale, though these issues only represent the tip of the iceberg when it comes to accessible seating at venues. The Americans with Disabilities Act improved the accessibility of sports and other entertainment venues to people with disabilities by ensuring wheelchair accessible seats are available. However, the legal obligations and practical issues of implementation remain unclear to venue owners and operators, as well as to people with disabilities. There has been little guidance from governmental agencies beyond the required number of accessible seats a venue must have or that sight lines must be comparable to typical seating. This has made it difficult for venue operators to develop consistent workable practices and for people with disabilities to know what to expect when trying to access sports or performance venues. The disability community shares common concerns with venues and operators that include verification of disability, fraud prevention, accommodation requests, companion seating for wheelchair accessible seats, seat location and lines of sight for accessible seating, transferability of tickets, retention and release of tickets, service animals and parking. Of course, these issues assume you can even purchase a ticket for an accessible seat. How tickets are purchased, whether through ticketing agencies or at the box office, through telephone sales, online booking or auction—all present ticketing challenges for people with disabilities as well. What our experiences show is that the policies and training on these issues vary from venue to venue, leaving people with disabilities to navigate an unpredictable system for purchasing their tickets. Many ticketing policies do not address the real world needs of people with disabilities or the legal requirements for providing accessible venues. These experiences were echoed in a July 2002 National Center on Accessibility report on ticketing issues. Based on a survey of venue owners and operators across the country, the report confirmed that there are no uniform policies and practices throughout the industry regarding companion seating, reserving accessible seating for sold out shows, fraud prevention, and reseating for line of sight over standing spectators. Disability Rights Legal Center (DRLC), through litigation and other advocacy efforts, is involved in ensuring that people with disabilities have the same rights, benefits and privileges related to accessible and companion seating at public and private entertainment venues. For example, when the newly built Kodak Theatre, home of the Academy Awards®, failed to provide a sufficient number of accessible seats and lines of sight over standing spectators, the DRLC represented a concert patron in her lawsuit against the Theatre. The suit settled in 2006 and required the Theatre to provide sufficient accessible seating and line of sight over standing spectators. In addition to changing ticketing policies, the settlement required staff training regarding customer service for people with disabilities. That case represented one part of the solution to the ticketing problem. DRLC also represented a purchaser of accessible seats from an online ticketing agency to ensure online sales were equivalent to the other online services provided. We believe that the time is ripe to discuss shared concerns from all points of view. In November 2006, DRLC convened a “National Ticketing Dialogue” in Los Angeles comprised of all stakeholders—owners, operators, ticket vendors, and patrons with disabilities—to discuss common concerns as well as to start thinking creatively about solutions. Through ongoing collaboration with stakeholders, DRLC’s goal is to assist in the development of model best practices that meet legal requirements and provide for more opportunities for people with disabilities to attend sporting and performance events. We are interested in receiving input from more people with disabilities about their experiences with ticketing issues at their local sports or performance venues. We will report back about the progress of our collaborative efforts and dialogue. Until then, enjoy the show! by Shawna Parks, Thomas J. Hill, Paula Pearlman and Eve Hill 8

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merica first became aware of amyotrophic lateral sclerosis (ALS) in a major way back in 1939, when New York Yankees champ Lou Gehrig told fans that he had it. Three years later the movie Pride of the Yankees immortalized the moment when the athlete (played on film by actor Gary Cooper) announced to a hushed stadium audience—as well as millions listening via radio at home—that he was hanging up his cleats.

ALS soon became known by the moniker of Lou Gehrig’s disease. Progressive, disabling and usually fatal, it is characterized by a wasting away of certain nerve cells of the brain and spinal column, a process that eventually shuts down functions such as walking, eating and ultimately breathing. At the University of California, Irvine (UCI), two men are on the frontlines of ALS research: Augie Nieto, who has the disease and chairs the ALS Therapy Development Institute (ALS TDI), and Dr. Tahseen Mozaffar, who once treated him for the disease. The two recently secured $36 million in funding to study what causes ALS and what might potentially treat it. The pair also researched other neuromuscular diseases, such as muscular dystrophy (MD), so when ABILITY Magazine’s editor-in-chief Chet Cooper went to interview Nieto and Mozaffar, he took along ABILITY’s longtime graphic designer Steve Mikailoglu, who lived with MD for 27 years. (Steve died recently, before he could see this interview published). Chet Cooper: Augie, you were featured on TV recently. Augie Nieto: I was on the Today show, where they did a series on real-life heroes. They profiled four people, and I happened to be one of the four. They talked with me about the irony of my being a fitness guy in my former life, and now, in my current one, living with a disease that takes away your muscles. They also looked at what I’m doing to change the way people look at ALS research. Steve Mikailoglu: I understand that part of that change is through a foundation? Nieto: I don’t have my own foundation. My business network advised me to work through an existing foundation, which was funding research for ALS at the highest level, and then to go to them with five requirements. So when I went to the Muscular Dystrophy Association (MDA), my number one requirement was that 100 percent of the money raised went to research. Number two: No money could be spent without my approval. Number three: Any money I raised was incremental to the ALS budget they had, and they already had the largest research program for ALS, so they couldn’t take the money and switch it with somebody else’s. Number four: Any relationship I brought to the MDA would be mine forever. And number five—probably the best one of all—there would be no overhead. With a lot of charities, they’ll charge you for corporate office staff, and I didn’t want that.

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Fortunately, the MDA was agreeable to the terms, so I now have a contract with them. It’s been an incredible tool to raise money, because I give my donors, who I view as ambassadors, a copy of the contract so they know where the money’s going—they know it’s going to research, they know it’s incremental, and they know that I must approve everything. So this has become the most efficient way for the ALS community to funnel money.

Cooper: Do you still find yourself involved in the fitness community, teaching the public about exercise and diet? Nieto: I’m still the chairman of a company called Octane Fitness, which makes the best elliptical product on the market. I’ve donated a lot of equipment for rehab to UCI and other institutions to really share what I believe. Cooper: And that is?

Cooper: You’re lucky, because even though MDA is a non-profit organization, they still have a large overhead. So you’re able to piggyback onto their operation without any cost. Nieto: What was even more encouraging was to see what Warren Buffett did a year later. He duplicated what I did. He said, “Look, I have $34 billion. Do I want to start my own foundation, or do I want to leverage what Bill and Melinda Gates are doing?” He did the latter. So to me, it was a validation of our strategy. Mikailoglu: How did the relationship between you and Dr. Mozaffar develop? Mozaffar: Augie first came to see me in August 2005. I was the fifth neurologist he had seen for a diagnosis of ALS. He had seen some of the best, at institutions ranging from Johns Hopkins in Baltimore to California Pacific. He and I have worked together closely since then, not only as physician and patient, but also on some of the endeavors he’s undertaken, for which I’ve served as an advisor. Over time, we’ve developed a very trusting relationship. He takes my advice; I take his advice. We each play the role of confidant. Cooper: So Augie, he gives you medical advice—what advice do you give in return? Nieto: (laughs) I give him some fitness advice—but no investment advice so far!

Nieto: I can sum it up in one word—move. (laughter) Cooper: Hold it, we’ve got to write that down... Move. Nieto: (smiles) Yes, move. Mikailoglu: Well, what kind of movement would you like to see in the research on ALS? Nieto: One issue I found as I went around the country meeting with doctors was most of them were researching their own hypotheses about what would slow down or stop ALS. But they weren’t really interested in the fundamentals. When I look at the problem with ALS, I frame it in four questions: What causes it? How do you slow it down? How do you stop it? How do you reverse the damage it does? I found was there was little focus on what caused it. If you make an analogy to erecting a building, everybody was interested in being on the 53rd floor, without first establishing a foundation. So over the next 24 months I intend to put together the largest single assault on ALS. We’re committing $18 million to the ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts, which is matching that money. So that means $36 million will go to research that will help us find answers to those four critical questions. Mikailoglu: What research are you doing in Southern California? Mozaffar: We do mainly clinical research and trials on ALS, including work both with experimental medications and with meds already on the market that have never been tried for this particular indication. In addition, we belong to other consortia, so we participate in research with other groups. The problem with ALS is that it’s a relatively uncommon disease. There aren’t that many patients with it, so the big pharmaceutical industry has little interest in it at this point. Therefore, to be able to attract funding for some of these research projects, ALS researchers and ALS physicians have to band together. So there’s the Western ALS group and the Northeastern ALS group and the Great Lakes ALS group. We meet to discuss Augie on the MDA Telethon with Jerry Lewis

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ideas. In one of the projects we worked on—which would not have been possible without Augie’s influence—we basically examined every single gene in the human system. We were looking for a specific signature—specific markers that might be different in ALS patients. Cooper: As a scientist working in this area, what are some of the problems you’ve seen over the years in ALS research? Mozaffar: Augie referred to one of them—in the ALS community, researchers tend to have their own religion, as far as which particular hypothesis or scientific idea they want to pursue, although those topics may or may not have any relevance as far as treatment is concerned. For example, about five percent of ALS tends to be inherited (runs in families). A lot of the work so far has been driven by this familial form of ALS, including the only animal model we have of the disease. So all clinical trials we have done to date—and all the medications we’ve tested—have been based on that single animal model, which may or may not be relevant to the other 95 percent of the ALS population. Fortunately, we now have the molecular technology to look across the spectrum of both familial and non-familial ALS in a study of 1,000 patients. Mikailoglu: You studied 1,000 ALS patients? Nieto: Actually it was 1,251. There was such excitement in the 14 different sites that people were driving in just to participate. As a business guy, I thought, “How do you truly get big pharmaceutical companies to go after the treatment of a disease?” And it’s really simple—you give them intellectual property protection. If you’re really going to do the fundamentals and figure out what causes the disease, you’re going to be able to patent all the way through the pathways and then license those patents to big pharma to give them protection. If you’re able to find a single drug that is applicable in the U.S., where there are currently 30,000 ALS patients, you can claim what’s called orphan drug status. That’s when fewer than 200,000 people are affected by a disease, and it allows us to take advantage of the protections put into place by the 1982 Orphan Drug Act passed by Congress. Those protections include seven years of market exclusivity, no restrictions on pricing, and fast track approval by the Food & Drug Administration. With orphan status, a drug treatment could command $150,000 per patient per year. And then if you extend that person’s life from five years to 10 years, then all of a sudden you have an economic model that serves as an incentive for big pharma to develop a product. So our approach is twofold: to extend the life of an ALS patient, and to own all the intellectual property (protect it, license it, generate additional income from the royalty that will fund additional research). Cooper: What did you find in your study of the 1,251 patients? Mozaffar: There were about 14 unique genes found. The most exciting part was that some of them were completely novel genes—genes we had not previously thought about. So I think we’re definitely getting new clues. Now the idea is to take it to the next step. Let’s focus on these 14 genes—these 14 pathways—and see if any of them are useful in finding a treatment. Studies from scientific and academic institutions have always been very hypothesis driven. And traditionally, if you did something out of the box as we did, it would be frowned upon. But I think times have changed. Now people are thinking, “Let’s do a shortcut approach.” The technology is available, so rather than coming up with a prejudged hypothesis, the thinking is, “Let’s do a completely blind search and see what we find.” ABILITY 13

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One important element we identified through this approach is a group of proteins. Though we don’t know their function yet, in terms of ALS, they may be relevant for how nerve cells communicate with muscles. They may also be significant in how nutrition is applied to the muscles. Mikailoglu: The project sounds like a large undertaking. Nieto: That’s why we formed a joint venture with ALS TDI and the MDA. We have a $36 million, three-year effort, where the chief scientific officer is from the pharma manufacturer Biogen. They have the largest animal model for ALS, which probably has a genetic predisposition, but probably is triggered by some environmental factors, which may be a virus, a toxin or simply stress. The U.S. government is looking into the stress component, because Gulf War veterans have double the rate of ALS compared to the general population. So we believe that by looking at everything at once— genomics (the study of the genes), proteomics (the large-scale study of proteins, particularly their structures and functions), virus scans, etc.—across a massive database, we’ll end up having the clout to get big pharma working on it. It’s a lot of work, but I believe we’ll end up finding what causes ALS in the shortest period of time.

individual ALS physician may not have enough patients to get a meaningful answer to the questions doctors have. Through the consortia, federal funding can become available, which is much more difficult to get on an individual basis. Cooper: So you’ve got data on these 14 genes. What happens next? Is the data considered yours—since you’re talking about ownership of the research. Nieto: It’s owned by ALS TDI. We own the intellectual property. Mozaffar: A lot of that information is going to be put in the public domain, the genetic sequences and everything. So now, if researchers in Germany want to look at the data, it’s available to them. And you can substratify—for example, if a patient has speech changes, you can separate that element out and study it. Or if you have a male patient, you can see if there are any different genes involved than with female patients. We now know that all of us have a certain genetic structure that may make us susceptible to particular diseases— be it multiple sclerosis, Parkinson’s, lupus or even diabetes. So let’s say that in Augie’s situation, it’s ALS. In my situation, it may be Parkinson’s. If I do everything right, I may not get the disease. But there may be unique environmental stresses that tip the balance.

Cooper (to Nieto): Augie, what is your role in this? Nieto: I’m the chairman of the ALS TDI institute. We are the largest single-focus ALS institute in the world. Cooper (to Mozaffar): And the consortia you talked about, how are they connected with ALS TDI? Mozaffar: If someone has a research idea and wants to try it on human patients, that person can approach the consortia. Any

Let’s say exercise may be one of them, or having served in the military. With what we’re working with, we can go back and say, “Let’s take 100 patients who served in the military and 100 patients who never served. What are the differences between the genetic sequences in them?” And maybe then we can target one particular gene. To really go out on a limb, maybe 10 years from now we’ll be able to say, “If you have this particular gene, maybe you should not be serving in the military, or maybe you should not be exercising, because you will come down with this particular disease.” Mikailoglu: Your recent analysis was done on microarray technology? Mozaffar: Yes, this was all microarray technology. Each particular chip had about 50,000 different genes that you could look at. And none of this was possible two years ago. Cooper: Just two years? Mozaffar: It’s not only the technology of miniaturizing it, but you need supercomputing powers just to perform the analysis. Right now, we rely on the supercomputers of TGen, which is a translational genomics institute in Phoenix, heavily supported by the state of Arizona. They’ve already looked at schizophrenia, Alzheimer’s and autism. These are people Augie and his Octane Fitness equipment

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who are already on the cutting edge of these technologies, which essentially came out of the National Institutes of Health (NIH). Nieto: TGen has the 39th-largest computer in the world in their building. Without that computing power, we wouldn’t be able to do some of these studies.

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Here’s another analogy that I think works. Historically, in our research, it was the subcontractors who were telling the architects what they should put in a house. But in fact, you should first have the architect’s vision. Then you hire the general contractor, and then you go out to the various subcontractors and they do the work. So instead of having all these subs at academic institutions dictating what research is going to be done, we’re actually defining what we want to do and then going out to them. So we’ll find the top proteomics lab in the world to do our work. We used the top virus scan, which happens to be at UC, San Francisco. They already have chip technology. So in my mind, by stopping the insanity of proving the hypothesis, we’re saying, “Look, let’s start over. Let’s start at the very ground and figure out what causes ALS, with no preconceptions.” Cooper: So you’re the architect? Nieto: My institute is. Mozaffar: He has a team. Steve Perrin, a PhD scientist with a lot of experience with ALS, recently joined the institute as the chief scientific officer. He used to work at Biogen, which has a whole program on ALS and actually has done the animal model and most of the research. So Steve brings with him a certain clout. Mikailoglu: Isn’t Biogen considered a big pharma? Mozaffar: It’s a biotech company. They had to shelve their ALS program because of financial pressures and the realization that they will never make the kind of money on ALS that they can make on some other drugs. But like Augie said, our new financial landscape changes the picture. So I think the talent is in place. If you have the money, you can farm out a lot of this work to the best labs in the country. Nieto: Our partnership with the MDA has allowed us the ability to go higher. We have 35 employees in Cambridge, Massachusetts, focused entirely on ALS. No other lab in the country can claim that. Mikailoglu: Do you think Biogen is in a good position to offer a drug for ALS? Nieto: They’re one of five companies we would go to, including Genentech and Amgen. Cooper: It’s great that you’ve got the entrepreneurial mindset to push this through. Nieto: That’s the big gift I have. As I mentioned, I look at donors as ambassadors and patients as customers. If you deliver what you promise, you get funding. People see the contract and the resources of the MDA—35 ALS clinics and 230 muscular dystrophy neuromuscular clinics around the country—as a resource they can tap. The MDA has academic partnerships around the country, and they have the ability to spread the word. So everything was already in place, and then I came along, and what I am is the spark plug in the engine. Though this had been very controversial—both in the academic world and in the ALS community, with some naysayers lining up— there’s no one doubting us now. ABILITY 15

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Cooper: Have you had talks with or worked with Jerry Lewis on this? Nieto: He’s actively involved. I use his telethon as a model. I was on a telethon with my wife, Lynne, and our family, where we received more donations in the 20 hour period after our appearance than in any other seg ment, because people get it. They know that there is this entrepreneur driving a matrix of performance. Gone are the days when people are willing to give money and assume it’s going to where it supposed to. We actually report how we’re spending the money and what we’re giving in return. We offer accountability. Cooper: That doesn’t get out as much as it should. As you may know, the MDA has gotten some criticism, but they’ve raised a lot of money over the years. Nieto: They raise $170 million every year. We’d like to exceed that. When we were first considering a partner ship, everybody said MDA was old school, and I said, “You know what? Then it’s time for them to go to school.” And to their credit, they’ve been incredibly forthright, supportive and really embracing of what we’re doing.

in the Netherlands, you go to one hospital. Or if you have muscular dystrophy, you go to one hospital. Con sequently, over the years, these specialized centers have seen 10 times the number of patients with a particular illness that any one individual physician in the U.S. sees. Thus, they have accumulated a great deal of research on neuromuscular diseases. Elsewhere in Europe, MDA is teaming up with Associa tion Française contre les Myopathies (AFM), which is the French association for myopathy. AFM has actually been the MDA organization there and is one of the biggest supporters of muscle research, especially mus cular dystrophy. Together, the two organizations are jointly funding a number of initiatives and essentially doubling MDA funding for these kinds of studies. Cooper (to Nieto): On a day-to-day basis, do you still do things with your company? Do you go to the office? Telecommute? Mozaffar: I think that’s a question that Lynne should answer, not Augie! Lynne Nieto: (laughs) He’s constantly on the phone.

And we continue to welcome new partners. We’re part nering with a lab in the Netherlands, where they don’t have a charitable organization to connect to that shares their vision.

Mozaffar: (laughs) Lynne has to make an appointment to see him!

Mikailoglu: Can you expand a bit on the research going on in the Netherlands?

Nieto: (smiles) I’m an entrepreneur. I’m wired that way. I have a mission right now.

Mozaffar: The Netherlands has provided some very helpful data. The country is unique because you can travel from one end to the other in only two hours. About 20 years ago they created specialized regional medical centers. So if you have, let’s say, ALS, no mat ter where you live

Cooper: That’s in line with one of our core beliefs at the magazine—just because you have a disability doesn’t mean you can’t work.

Lynne: We email each other from upstairs to downstairs.

Nieto: I think we’re fortunate with today’s technology. I have video-conference equipment right at my kitchen table, so I can have conferences with people in the Netherlands or in Paris. It’s all broadband. Cooper: Dr. Mozaffar, let’s talk some about your clinic and what you’re doing here at UCI. Mozaffar: In addition to my ALS hat, we have one of the MDA clinics here, dealing with muscular issues as well. We’re one of the 36 designated ALS centers for the MDA in the country. We serve the entire area of Orange County in California, so our target population is about five million. But in addition, we’re now starting to see a lot of patients from Northern Cali fornia and from Arizona. We have a multidisci plinary team, including a full-time physical therapist, a dedicated speech therapist, a res piratory therapist and a social worker, all of whom deal exclusively with neuromuscular patients. The idea is to give comprehensive and multidisciplinary care to our patients, Augie and Lynne Nieto

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The ABILITY House program, in partnership with Habitat for Humanity and ABILITY Magazine, outreaches to volunteers with disabilities to help build accessible homes for low income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries, please contact us for more information. info@abilityawareness.org www.abilityawareness.org taking care of their social issues, their ability issues and their disability issues. A social worker works with them to make sure that they have disability insurance and that they apply for Medicare and other services. My assistant and research coordinator, Veronica, also runs support groups. One is a Spanish-speaking support group for neuromuscular patients, and the other is the ALS support group for MDA. So again, our work goes beyond what we do in the clinics. We’re very intimately involved in the care and lives of our patients. Cooper: Are there any new treatment developments the public may not have heard about yet? For instance, I was looking at some research on my own and saw that there might be some advantage to electronic stimulation? Mozaffar: Yes, some people are looking into that—in particular, electronic stimulation of the diaphragm for breathing capacity. There’s a surgeon at Case Western Reserve University in Ohio who’s starting to work with pacemakers for the diaphragm, with the idea that the devices will keep patients away from ventilators for as long as possible. So I think there are newer techniques coming out. And the advantage of the consortia is that you can get the number of patients that you need for a study to prove that treatments like these work.

Mikailoglu: Are you doing anything like that here, at the clinic? Mozaffar: At this point, no. But we have a very strong biomechanic and biomedical engineering faculty here. They do a lot of robotic work and they are thinking about several applications. But we haven’t gotten to the stage of implementing any of them yet. Mikailoglu: You call this your clinical research facility. Are you running active protocols here? Do you provide regular clinical services? Mozaffar: We don’t do any billable procedures. This is all research—we’re federally funded as a satellite clinical research center out of UC, San Diego. But what we are transforming into is something called a clinical translational research unit. We just submitted our application to the NIH to be one of the five new ones they will fund this year, where we can do bench-to-bedside research. Thus, we will soon be able to bring all those ideas that are percolating in the labs to clinical reality. www.ALS.net

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t’s rush-rush in the world of Emme Aronson, the supermodel who frequently lectures on eating disorders, image and self-esteem. So-called ‘plus-size,’ she has changed attitudes about beauty and who belongs on the catwalk. With the QVC cable network, she’s developing a new clothing line for full-size women, and with her husband and manager, Philip Aronson, she’s written a new book, Morning Has Broken. It chronicles their painful passage through his depression and on to a healthier place. Recently, Emme slowed down, briefly, to talk with ABILITY Magazine editor-in-chief Chet Cooper via phone.

Chet Cooper: Are you driving? Emme Aronson: Yes. Cooper: Uh-oh. Is that safe?

up, his eyes were clear. I looked at him and I was like, “Wow, I cannot believe that you’re back.” It took Jonathan leaving this earth for him to come out of it, which was very bizarre. Cooper: You’re connecting his emergence from his depression with the ECT treatment and his brother passing away? Aronson: Yes. The end of the ECT treatment was in the latter part of 2003, and Jonathan passed away in February 2004, and the day after Jonathan passed away, I could clearly see that something had changed within Phil. When he started slipping into depression in 2001 and on into 2002, you would see a vacancy in his eyes. And the day after Jonathan passed away in 2004, I looked at him and it was remarkable to see the difference in the eyes of a person who had been ‘lights out’ to a person who was alive again.

Aronson: I have hands-free. Thank you for being concerned. Cooper: I’d like you to close your eyes and think about this next quesiton. Aronson: (laughs) I’m about to park. Cooper: Good, Emme when did you first realize that your husband might be ill?

Cooper: You mentioned that Phil’s brother is on meds and that he’s very serious about staying on them… Aronson: And Phil’s on the same path. There are a lot of people with depression who, once they are on their meds and things are going well, jump off and say, “I don’t need those any more.” Cooper: Medication management can be a real challenge.

Aronson: It was probably in the late fall of 2001, after I had given birth to my daughter. He started to be a lot less social. Thanksgiving came around and he was in his room, moping, and I was like, “Wait a minute. Aren’t you coming out for dinner? Aren’t you coming out to play your music?” He’s a musician. He plays guitar. I’d also started to notice that he had little outbursts of anger, which is very unlike him. And I’m like, “Dude, what’s up? Why are you being like this?” And it slowly progressed to true isolation and on into the depths of depression.

Aronson: That’s when a lot of suicides take place, after people jump off their meds. But that wasn’t the case with Phil. Actually, he was on a new med for two weeks, and that’s when he was suicidal. Cooper: Sometimes during that period when the doctor and the patient are trying to figure out the best treatment, the risk factor is heightened. Aronson: Right.

Cooper: Did he have any personal or family history of mental illness? Aronson: Yes. He’s a twin, and his twin had tried to take his life prior to Phil’s illness. His twin had gone through a severe depression at one time, I think 20 years earlier than Phil. But not Phil. Prior to 2001, you’d never describe him as someone who was low or moody, but that was certainly what he became. Cooper: What happened with his brother? Did he go through a similar process of recovery? Aronson: His twin is doing great. He’s happily married with two children. He is on medication, and doesn’t play with that. Phil’s younger brother, Jonathan, had a brain tumor for 17 years. The day after his younger brother passed away in 2004, Phil, who had been undergoing Electroconvulsive Therarpy (ECT), snapped out of the depths of his depression. That day when he woke

Cooper: At what point did you think that there was a story to be told, and why? Aronson: Quite frankly, I didn’t want to talk about anything having to do with depression, not because of the stigma, but because I didn’t want to relive such a hellish experience. But Phil wanted to turn the whole mess into a message of hope. He wanted to be able to help change legislation around health care, because if you have something physically wrong with you, the chances of it being covered by insurance are so much higher than if you have a mental illness, which can send a family into bankruptcy. There’s such disparity within health coverage. Phil also recognized the stigma saying, “I have a mental illness and I need therapy.” People who have never had therapy say, “Really?” He just wanted to break that all down, to say that this is more normal than you might realize. ABILITY 19

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mental illness issue, whether it’s depression or such, but you’re right, we so easily put the idea out there wrapped in a negative connotation. Aronson: We do it every day. It’s so true. Cooper: In the old days, people dealing with mental illness issues might be put in a “crazy ward.” Aronson: That’s the nutty thing about it. Cooper: “The nutty thing.” (laughs) Aronson: I did that for you. (laughs) Cooper: And I appreciate it. Emme and Philip’s wedding

There are so many people walking around who need help. We have twice as many suicides as we do homicides in our country. So he got impassioned to bring this whole, hush-hush issue to the forefront of the national conversation. So it was his drive that prompted me to sit down with him and retell the stories of what we went through. Cooper: To whom are you targeting to book? Aronson: We wrote it for couples, for doctors, for patients, and for people who may be afraid of going to therapy. A lot of people who have read the book have said, “Oh my gosh, I just got this book for my neighbor. He really needed to read it, and now he’s going into therapy, because he saw that he’s not alone.” This is a book for people who are either on the fringe of medical care or on the verge of depression. Cooper: Did you ever think that during those really horrible times that you’d move out of the throes and emerge with a book that helps others? Aronson: No, no, no, no, no, no. When it was suggested, I was like, “Are you crazy?” It was very, very hard to write about this subject. In 2004, all I could think about was getting back to a semblance of normalcy. But the book is one of the best things we’ve ever done, to put on paper our messages of hope, and not in a sugar-coated way, but in a real one. And to do some good, to let other people know that they’re not so alone. I’m happy that Phil pushed me. Cooper: I’m sure you notice that in your answer just now, you made the statement, “Are you crazy?” Aronson: Yeah. It’s a typical thing that we say in our culture, but we don’t really think about it. Hmm... Cooper: It’s ironic that the book destigmatizes the concept of what we say is “crazy,” which is basically a 20

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Aronson: A lot of people need to get something off their chests, which has been bottled up. Also, people need medications to even them out. They don’t need to be locked up in loony bins, really. I think the matters of the brain and of the mind are at the tip of the iceberg. And every person—every body—is a chemical experiment. That’s part of the frustration, and sometimes people give up while trying to get the right meds to balance themselves, because it can take a few months to tweak the right medicine cocktail. Cooper: That’s something that people don’t understand. They think that they can just take a magic pill and everything will be OK. This is still a relatively new science that psychiatry is working in right now. These new meds still—as you said—need to be tweaked for each patient, each body, if you will. We see that here. One of our health editors is a psychiatrist in private practice. She says that we’re still in a day and age of trial and error with meds. Aronson: That’s true. Cooper: Even with ECT, the science is still out on how that actually works. But it appears to be almost like rebooting a computer. We reboot the human computer and the glitch is gone. Aronson: Yes. They really don’t exactly know. They don’t. They just know that it works. Cooper: It can temporarily affect memory, but other than that the benefits tend to outweigh the risks. Especially for those who can’t find any other treatment that works, because they’re so at risk of suicide. But there are still people who are against the thought of ECT. I think it’s from the early days, when there were people who may have been treated against their will. During your most difficult days, when you didn’t quite know what was going on, how did you avoid thoughts that maybe Phil’s situation was hopeless and that maybe you should divorce him and cut your losses?

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Aronson: The one thing that kept me together during the toughest times was our friendship. Phil’s my dearest friend, and you don’t bail on a friend when times get tough. That’s number one. But also, after he got out of ECT, and kind of snapped out of it, he started trying to figure out what he was going to do. That’s when we really had to struggle. I had put my career on hold, and we needed all hands on deck—moneywise from our family—because Phil’s treatment had been expensive, and so much of what we had to pay for wasn’t covered by insurance. Also, at that time, Phil was reevaluating his life, and there was a peculiar, post-depression scenario where he went on a spending binge. I guess he figured, “Well, I almost died and I’m alive and nothing really else matters so I can do whatever I want.” When we went into couples therapy, I said: “Here I had a man that that I absolutely loved and adored and married because he was a great partner, and then, one day, he just wasn’t present. It truly was glaring. At that time, I moved the company out of our house and into an office space. I separated church from state. (laughs) There were a lot of changes. My life did not stop when his stopped and he was in an institution, depressed. That was hard for Phil, knowing that life did not wait for him, but kept going forward. The doctors didn’t say to be aware of this: That right after ECT, “He’s not going to be able to talk completely, he’s not going to be able to drive, he’s not going to remember how to say certain things, but all that will come back, don’t worry,” you know. But the real adjustment period and almost demise of our relationship was post-depression. I was, like, “OK, you have six months, dude!” It was January of 2006, just recently, when I said, “You’ve got to get this together. You’ve got to get a job. You’ve got to start working. Do something!” And it was up until September 2006, that it was really touch-and-go with us. We kept throwing ourselves into therapy. We both really sought to understand one another, and where the other was coming from. Then, all of a sudden, it was like he said, “I’m going to make this my business. I’m going to lecture at high schools, junior high schools, elementary schools, universities. I’m going to talk about my experience.” He totally turned this whole thing around. He said, “I’m going to tell my story at a congressional hearing.” And all of a sudden, a month ago, he was speaking at a Congressional hearing with Robert Kennedy on the mental-health parity bill for that issue as well as addiction. And there he was, singing for them a song he wrote on depression.

Cooper: So Phil’s best therapy has been finding a

mission?

Aronson: Exactly. It didn’t make sense to him to do any old job. He’s extremely articulate. He’s a great lecturer. And once he started being unafraid to share his story, he started getting booked to speak, and this whole other thing happened. It’s wonderful. He helps 20 people on a rotating basis, depending on degrees of difficulty, to try to encourage them to get into therapy or to help other friends, by saying, “You’ve got to talk to so-andso, he hasn’t left his house in two months.” Calls like that. I will often find him, calling different people back and checking in on them. He spends about an hour or two on the phone with them. And as they graduate, he always says, “Pay it forward. Share what you’ve learned. Help other people in your community.” We had a very strong relationship going into this, and it is a testimony to that strength that we stayed together. I’m very, very happy to see that he’s doing what he’s doing. I’m proud of him, even though I had wanted to just clonk him on the head and say ‘goodbye!’ (laughs) But I’m glad I hung in there. Cooper: So you were thinking maybe the hammer

approach instead of the electrical approach at that

point?

Aronson: (laughs) Yes, exactly! Cooper: Tell me about what’s happening with your

career?

Aronson: I have a children’s book coming out, What Are You Hungry For? I wrote it because I often deal with women’s issues and body image and self-esteem. Then I realized that here I’m talking to mothers and daughters about the obesity problem in our country, and I want to be able to have the mothers and the children talk to each other about the emotional and physical aspects of hunger. I think being hungry for love, attention and pats on the back, all tie into why we sometimes under eat or Emme and Toby

He formed a company with three other men called Initiative for Dealing With Depression Issues (IDWDI). The other three are based out of Minnesota. They’re going into businesses to tell them how they can save lives and money by bringing high-level management up to speed on how to get their employees help faster and quicker than when they waste time trying to figure out what’s wrong with Johnny. ABILITY 21

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over eat as adults. When it’s all put out in front of them, there’s nothing embarrassing, because I’m doing all the talking, and you can talk about any issue, once it’s out on the table. So in thinking about this issue of feeling loved and connected, and how we sometimes use food for that, I thought it was important to communicate it to people at a young age. So this book is for three to fiveyear-olds and their parents. Cooper: So you’re trying to address the issue of obesity, in a sense, earlier on. Aronson: Not only obesity, though it is epidemic, just as anorexia is epidemic, but we also have an epidemic of kids not feeling connected. We have 80 percent of Americans feeling dissatisfied with the way they look. It’s all this stuff that somehow goes back to an emotional component, in my opinion, that’s somehow being overlooked. Something is not connecting, and it could be the innate craving for love and acceptance. And sometimes, because of the chemical component of feeling better once we eat, we use food to give us a boost. It all ties together. Without good body image, without good self-esteem, you’re not able to go live your dream, whatever it happens to be. We all have access to our wishes and our desires, but what holds us back from getting those wishes and desires, I believe, is having a poor connection to self.

Aronson: That’s too funny… But what I’m saying is, if we don’t really have a sound understanding of who we are, you could say, “Oh, I want this and I want that,” but I don’t think it’s going to be as convincing as if you don’t have a firm foundation. I say that to people all the time. If you think that you’re going to be happier 100 pounds from now, you’re sorely mistaken. A lot of people are going to say, “Oh, you look thinner!” But deep down inside your heart, you’re still that fat person. You need to see yourself as this curvaceous, ample, bountiful person that has so much character and loyalty and selfworth, that you make the positive changes to improve your health. It won’t change who you are, but if you think that you want to become a millionaire and you put your nose to the grindstone and you work and work and work and work, you’re going to be a lonely, lonely person if the million dollars is your only goal. Money doesn’t buy you love, and the attainment of thinness won’t either. You have to make decisions from a point of wholeness, not thinking that you’ll get to that point after you do X, Y, and Z. That’s why we have so many Americans gaining weight after losing it on these easy-fix diets. So I’m very interested in the whole psychological aspect of why we do what we do, why we’re not nicer to ourselves, and what we can do to get there. Cooper: It all comes back to mental wellness?

Cooper: It’s not something to do with The Secret?

Aronson: Absolutely! This whole issue of body image and self-esteem and eating disorders are all related.

Aronson: (laughs) You mean, The Secret that’s being talked about these days?

Cooper: So you’re in a sense paralleling the area in which Phil is working.

Cooper: Right.

Aronson: We’re both looking at how we’re wired. Cooper: Right, and how we maintain our mental wellbeing. Aronson: I never thought that we’d be going down this path, but it’s a good path. Cooper: I think it’s a great that you’ve written the book in such a way that other people can begin to understand some of the issues around depression. It affects the whole family and the community. So it’s important to get that message out a much as possible. Aronson: I agree. Cooper: Are you still driving? Aronson: (laughs) No. I’m at my location, I’m actually going to jump out. Bye Chet. Cooper: Careful... Bye Emme. www.emmestyle.com

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he word dates from the late 16th century and originally referred to a sudden lapse in consciousness, believed to come from the “stroke of God’s hand.” That sounds pretty tame compared to how we think of strokes today. As you may know, a stroke takes many forms, including blood hemorrhaging into brain tissue, and ruptured aneurysms.

on the patient’s chest, much like a pacemaker for the heart. A magnetic “wand” can then be held over the patient’s skin above the implanted device to turn it on and off.

Strokes affect 700,000 people each year in the US. In the end, most of them are left with debilitating deficits. This has spurred medical scientists to seek new ways to improve the brain’s ability to bounce back from such a devastating blow. Recent advances suggest that after a stroke, there’s potential to heal sick neurons in the brain, which led researchers at Northstar Neuroscience, Inc. to test this theory on rats. Strokes were induced in the lab anminals, then scientists placed low-voltage electrodes on the surface of the brain that was still functioning. They hoped that this extra stimulation, combined with conventional therapy, would improve recovery. Sure enough, it seemed to work. After several more experiments by different scientists, and rigorous review by regulatory agencies, Northstar provided funding for several university research centers across the country to execute a trial on humans.

Winstein: What’s done, which is really innovative, is that the patient undergoes a functional magnetic resonance scan (fMRI). So we see the area of the brain that “lights up” on the scan. In other words, the area that’s active when the patient is trying to move an affected limb in whatever way they’re able to move it after the stroke. And then that area is used to decide where the electrode goes. So you’re really optimizing, not just putting the electrodes where you think they should be. You’re putting it where the neurons may be sick but not dead, according to the fMRI. The idea being that some neurons have the capability to return to normal.

To learn more about this project, Chet Cooper, ABILITY Magazine’s editor-in-chief, and Dr. E. Thomas Chappell, ABILITY’s health editor, inched through infamous LA traffic to visit Dr. Carolee Winstein, professor of biokinesiology and physical therapy at the University of Southern California’s School of Medicine. They found her seated in her cozy, but well-organized office. Chet Cooper: Let’s talk about the Northstar studies. Dr. Carolee Winstein: The exciting aspect of these studies is that they use technology in conjunction with highly-focused physical therapy in a way that helps patients recover better after a stroke. A stimulator is placed on the damaged area of the brain to make those neurons a little more active, and help them “reorganize” in response to the movement that the patient is going through when they’re in therapy. So the electrode is turned on only while they’re getting therapy.

Cooper: So do you map out the brain to determine where the device is best placed?

Cooper: What if the patient has absolutely no movement in that particular hand or arm? Winstein: Then they’re not a candidate for this type of treatment. There’s no miracle here. Basically, if there is some connection between the brain and the hand, as evidenced by the fact that they have some movement, then that serves as a substrate for the stimulator. Dr. E. Thomas Chappell: And this is being done in small groups of patients now? Winstein: Yes, by a neurosurgeon right here at USC. But there are 21 medical institutions across the U.S. participating in the study. Chappell: Your neurosurgeon here probably specializes in epilepsy, right? Those are the surgeons that are more used to putting in these types of devices. Winstein: Right, and he does some of the deep-brain stimulation surgery as well. What’s interesting from a neurosurgery perspective is that to him, this is totally a piece of cake. I look at this and I say, “God, they’re opening up the skull!”

Cooper: Is this an implanted electrode? Winstein: Yes. Actually, a small area of the skull is taken off, and the electrode is placed right on the dura, which is that tough membrane that covers the brain, and then the skull is put back on. A wire runs under the scalp to an electric generator implanted under the skin

Chappell: Not many people realize that neurosurgeons open up patients’ skulls every day, and often to do much more involved procedures than place electrodes, which doesn’t mean that placing electrodes doesn’t have its risks, such as infection or bleeding.

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Let’s talk more about what you learned from the lab animals.

Winstein: Not that I know of. Everyone involved in the study is blinded to the ongoing results, of course.

Winstein: There were rat and primate models. It was actually in that work that they determined that the combination of physical therapy plus electrode stimulation is better than just physical therapy alone.

Chappell: And the data gets sent to a central data processor?

Chappell: So researchers have some way of causing the experimental animals to have a stroke and then they provide them some type of physical activity?

Cooper: Why do you think they are putting press releases out now, while it’s still in this stage?

Winstein: Yes. Currently, there’s a lot of animal research done using skills training, such as picking food pellets out of little cups and other fine-motor skills. For instance, they use what’s called a Kluver Board, for example, which has holes that start out big and get progressively smaller. Scientists train the experimental animals to pluck banana pellets out of progressively smaller, and thus more difficult-to-access holes. That requires individual finger movement. So the parallels between the animal model and what we do in therapy for humans get closer and closer. It’s really exciting. Chappell: And how does that translate to what they’ve done with humans. Winstein: They did two small-scale human studies. I think the first one involved only four patients, and the second one maybe 12. I think eight had the surgery and four didn’t in that study. The four that didn’t served as the control group so that a comparison could be made to see if the people that got the electrode stimulation really faired better. All subjects got physical therapy, but only the eight got the electrode implanted. So the question is whether the risk of having this kind of surgery would actually benefit a stroke patient more than just therapy alone, because obviously that’s going to have to be proven. Cooper: And the Northstar study has how many subjects? Winstein: The one that we’re doing right now, which is the pivotal trial, has something like 180 subjects. Chappell: Throughout the 21 centers? Winstein: Yes 21 centers. So far, they’re doing pretty well. Northwestern University is in the lead now, I think they’ve randomized on the order of 30-some. We’re up to I think 13 or 14 patients that we’ve randomized here at USC. We’ve been doing this now since we got IRB approval a year ago January. Chappell: And how long has the study been underway? Winstein: Well, I think they’ve been recruiting patients for the study since 2005. Chappell: Has there been an interim analysis at all? 26

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Winstein: Right. Exactly.

Winstein: I think it’s probably just to let the community know that this is coming down the pike. I think Northstar has carved out a somewhat unique niche. They’re also looking to have a small study going to treat aphasia, for those who have speech deficits after a stroke. There’s going to be a larger-scale study starting up in Germany, I think. Northstar has really done their homework. and they’re collaborating with a number of basic scientists to understand the frequency and strength of the electrical stimulus. Cooper: How would they handle the therapy for aphasia? Winstein: Well, I’ll tell you what’s really interesting about the aphasia study: it started because they had some anecdotal data from earlier studies. Some patients with both paralysis in the right hand and difficulty with speech would get both motor and speech recovery therapies. So they thought that it might be worthwhile to specifically target the speech area. If you think about it, you’re facilitating the connection. You have a damaged area of the brain that is not working well after the stroke. The question is, how can we get the connections that were lost back? And we now understand that the brain is really much more plastic (capable of changing at the cellular level) than we’ve given it credit for. It’s not this static thing that you take a chunk out and it’s gone. It’s constantly reorganizing. That’s how we learn new things. So they’re thinking about that from the standpoint of what might facilitate the development of new connections in the brain and then coupling it to meaningful physical activity. So for recovery of speech, a patient would practice verbal tasks while the electrode stimulates their brain at a low level. It is just enough to get the neurons “buzzing” so they are more likely to make the new connections necessary for recovery of function. Though it seems to help, no one knows exactly why. It’s all theory at this point. Chappell: The challenge here is to have enough electrical stimulation, but not so much that you cause seizures. Winstein: Right. I think of it as just sort of slightly raising the electrical baseline for neurons so they’re more likely to “fire.” But they’re actually firing in response to the functional demands that are being placed on them in

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the therapy. You’re sort of raising the capability of “sick” neurons to work, and you’re influencing how they work through physical and speech therapies. That is why the combination of the electrical stimulation and the physical therapy is so important. It’s not a passive, “slap on an electrode, I’m going to get better” kind of thing. It’s really putting the two together, which is the exciting part. Cooper: We had somebody submit a story to us years ago, and I remember that she started the story with, “I was whopped in the head by a ’67 Chevy.” She was a writer, and she lost her words. She would go to foreign movies and continually look at the subtitles to try to figure out the connection, and finally she started to connect the words with their meaning. Reading the subtitles was her way of giving herself therapy. Winstein: People often connect more easily to things they like doing. That’s so much a part of learning— doing something you like. Otherwise, therapy can be really boring. Chappell: You were just saying how a lot of physical therapies have evolved. I imagine that, for instance, a therapist might have been working with a patient and discovered that that person gravitated towards something, and the therapist went along and said, “OK, let’s try it.” Winstein: I think customizing therapy can really help: What does the patient want to do? For a lot of our focused therapies, we start out by asking, “What do you want to be able to do that you can’t do now?” Because then the patient’s more motivated, than when the therapist decides what they think the patient needs to accomplish, which is the more traditional approach. Now we’re really engaging the patient, because not only do we recognize that it is important for learning, but it also is more individualized. Cooper: If the studies on stroke patients are successful, do you think brain-stimulation techniques will be tried on other patients with brain disorders? Winstein: Possibly. Some scientists are starting to consider a hypothesis that there is always some neural substrate there to work with, and to ask how can we maximize neural reorganization for functional gain? Injuries of nerves in the arm or leg, for example, can induce reorganization in the brain. So things like dystonia (abnormal muscle movements), where there’s a maladaptive organization of neurons, might actually be alleviated by a combination of electrical stimulation and physical therapy. So it’s conceivable. I have a colleague who experiments with a primate model of repetitive stress. For a long time, we’ve known that a primates’ hands, including humans’, are specifically represented in one well-defined area of the brain.

What appears to happen in dystonia is that a person loses individual control of the fingers. The movement becomes disorganized. The brain circuits that should control of the back of the hand begin to control movement on the front of the hand, for example. That’s one of the hypotheses for why people with dystonia have difficulty moving in coordinated ways. So you could potentially use the kind of stimulation we have been talking about, to help reorganize the brain and get back the proper control of the limb. Chappell: One could theoretically remove a brain tumor, do a functional MRI and, if there’s some residual activity in that area of the brain, provide stimulation plus physical therapy to aid in recovery. Brain injury, however, is going to be a little trickier, because it causes damage throughout much of the brain. On the other hand, if a brain injury patient had a bruise in a specific brain region, for instance, causing paralysis in one limb, the technique might still apply. Winstein: It could have far-reaching effects that we haven’t explored yet. For instance, there’s a lot of work going on right now in brain-computer interfaces, for example, where computers allow people to actually move cursors on a screen by just thinking about it. ABILITY 27

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David Anderson at Cal Tech and a number of others are performing research in this area. Cooper: The past president of Atari created a game years ago called Mind Drive, in which a player could control a graphic image of a skier going down a slalom run by putting their finger in an electrical sensor. When the player first began to play, and mind you this was without touching anything, no joystick or other hand controller, the skier would just hit every flag, boom! boom! boom! But as the person continued to play the game, he or she would become more able, presumably through some sort of biofeedback mechanism, to control the game through thought. Winstein: So these kinds of possbilities are coming down the pike. I think it’s just going to be a matter of time as technology meets biology. Chappell: Did Northstar Neuroscience find you guys or did you find them? Winstein: They called me originally and asked if we wanted to become a study site, in part because of our work on the “constraint-induced movement therapy” trial, the results of which were just published last year. We had the infrastructure here to put together a highly organized trial. So I had to find a neurosurgeon and neurologist to help us. We already had collaborations with the Neurology Department, but we needed a neurosurgeon with expertise in implanting electrodes. Eventually we got in touch with a neurosurgeon at USC, who I know from the other work I’ve done.” So we put together a team and I then sent a proposal to the USC Institutional Review Board (IRB). Chappell: Tell us about the other trial you mentioned. 28

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Winstein: Constraint-induced movement therapy is based on de-afferentation experiments on primates. Primates, after they are “de-afferented” which is much different from having a stroke—wouldn’t use their deafferented limb unless their good limb was restrained. This led to a couple of human trials. The first was published in ’94, and then another investigator at Emory University did more research on this. There was enough supportive data in the literature to convince the NIH (National Institutes of Health) that we were ready for a full-blown clinical trial. So that’s what we did at six centers across the U.S., where patients in the study were between three and nine months post-stroke. They had gone through the standard rehabilitation. Based on more classic views of brain recovery, these patients were not expected to recover further. It was a “cross-over” design study, with two groups: an “immediate” and a “delayed” group. The patients in the delayed group would come to be evaluated for the study and they wouldn’t get any additional therapy until a year later. Then they would “cross over” and become the group that got the constraint-induced therapy. The “immediate” group would simply begin the constraint-induced therapy right away. The experiment has to run this way to prove that the new therapy works. There were 222 patients in the study, which continued for five years. There were two main outcome measures: a timed performance task of upper extremity movement and a rating scale that documented how much they used their affected arm for various activities during the day. We assessed the subjects for a year, and we found a huge difference in the two groups. At the end of the first year, the group that got the constraint-induced therapy—the “immediate” group--had experienced further improvement in the function of the affected limb compared to the group that did not get the additional

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therapy. The “delayed” group was then allowed to get the therapy and also experience the same benefit. Chappell: How did the constraint work? Winstein: On the good hand, they wore a mitt like the ones you use on people in the hospital to keep them from pulling their IVs out when they are confused. Imagine how much you can do with your fingers when you are wearing a mitten for cold weather. The target was to have them wear the mitt on the good hand at least 90 percent of waking hours. They could use the good limb for balance, but they couldn’t pick up an object or write with that hand or use it in any other way. They also had to keep a diary of their activities. There was a compliance device in the mitt that electronically registered the actual time they wore the mitt. We could see how their diaries compared to what they actually did. Long story short, we published our trial in The Journal of the American Medical Association JAMA, which was actually really nice, because rehabilitation reports seldom get high-profile exposure like that associated with a journal like JAMA. It turns out this was the first phase-3, randomized clinical trial to study a rehabilitation technique for stroke. It has made a great impact on the thinking of people involved in rehabilitation therapy. So it was sort of on the heels of that study that the people at Northstar Neuroscience went forward with plans to study a combination of brain stimulation and rehabilitation therapy. Now they have this “benchmark” to which they can compare their findings. It’s like, OK, if you can do that, using a non-invasive procedure, we’d better show that we can get better results by adding this invasive technology. Chappell: Maybe the next step would be to combine electrical stimulation of the brain and constraintinduced physical therapy? Winstein: Exactly. And I just got back from a Board meeting with them and we were talking about studying the combination of electrical stimulation and constraintinduced therapy. Cooper: Do you limit the studies to a specific age group? Winstein: Yes, there is a lower limit. We can’t include children with strokes because it is quite different from strokes in adults. So, the study was limited to people who were 21 and older. We didn’t have an upper limit. I think the average age of the constraint-induced therapy trial Excite was 65, so this has the potential to help a great many people.

he most common form of stroke occurs when part of a “plaque”—a collection of mostly fat and cholesterol—attached to the inside of an artery inside a blood vessel, breaks off and is carried “upstream” to the brain. Once it lodges there, blood can no longer flow to parts of the brain supplied by that small vessel. Without the oxygen and nutrients carried by the blood, brain cells (neurons) die in a matter of minutes. When this occurs, much of the function governed by these cells is lost and never returns. One of the most likely places for this to occur is on the main arteries on either side of the neck that carry most of the blood from the heart to the brain. You can feel your carotid artery pulsating with your heartbeat by gently pressing your neck just beside your windpipe (trachea). Practically any area of the brain can be affected by a stroke. Often the area involved controls the arm and leg. Remember, each side of the brain controls the opposite side of the body. In most people, if the left side of the brain has the stroke, the ability to speak or understand speech is also disturbed. Over time, some of the lost function may return. While it is widely accepted that this is not due to dead neurons coming back to life or being regenerated, the exact reason the recovery occurs is far from fully understood, though many theories abound. No truly effective treatment exists for stroke. Currently, prevention is the best medicine. One should work diligently with one’s physician to control body fat, smoking habits, cholesterol, blood sugar and blood pressure, which are the best ways to reduce the risks of having a stroke. However, even if everyone did this, strokes would still occur. They’re simply not 100 percent preventable. When a person survives a stroke, the most significant recovery occurs within the first six months. Speech, Occupational and Physical Therapies have long been an important part of the recovery process. These therapies, provided by specifically trained experts, typically last an hour each per day until maximum recovery has been achieved. If a patient’s individual needs do not require the Speech Therapist, then that hour might be substituted by an additional hour of one of the other therapies more suited to the patient’s individual needs.

www.usc.edu www.northstarneuro.com.

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o improve our air, make us less dependent on foreign oil (and possibly pocket some cash), Phoenix Motorcars recently unveiled their slick, new electric truck in L.A. at the Peterson Automotive Museum. There, the multitudes, including green giant Ed Begley Jr., gawked at the new Phoenix as if it were a celebrity. Maybe it will be if it lives up to promises to charge in 10 minutes and fly down the freeway at 100 miles an hour, all while looking sporty. But alas, these electric trucks and SUVs will not be available in onesies and twosies. They’ll only be sold to those who can spring for a whole fleet. So with nothing to shop for, ABILITY Magazine editor-in-chief Chet Cooper, and managing editor Pamela Johnson, munched on chips and salsa with seaweed, and looked around at the museum’s electric, steam-driven and dieselengined cars of years gone by. That’s when the ABILITY team ran into Scott Berman, who’s been tooling around the electric car scene since 1993. In our world of rapidly rising gas prices, he talked with us about why, historically, alternative-fuel-vehicles have remained in the slow lane, and what engineers like him are doing to move them into a faster one. Here’s what he had to say: I’ve been into electrical things ever since I was a kid. Back then, I took lawnmowers apart and was really into figuring out how things work. And then around 1993, when I was in graduate school at Wayne State University, I heard about a hybrid-vehicle project there. They were building a vehicle for competition, sponsored by the Department of Energy and three auto companies. There were a bunch of schools competing—probably 20 of us—to develop a hybrid electric vehicle, on the order of today’s Prius, but back then there were no vehicles like it. The goal was to make a car that would double the gas

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mileage of existing vehicles on the road. My role in the project was to design the electronics that took the energy from the batteries that drove the electric motors that ran the vehicle.

and make kerosene out of it.’ So now they had fuel that was much easier to get, much cheaper than whales’ oil, and plentiful. Much of it was originally found in Pennsylvania, and there was just tremendous amounts of it.

We used both an electric battery and motor at the time, so as to optimize the efficiency of the engine, just as the Prius does. Basically, when accelerating, you use the charge in the batteries to from the electric motor, which helps reduce the amount of power that the gasoline engine needs to produce to move the car forward. That’s important because during acceleration, gasoline engines are very inefficient. It might be 10 percent efficient, and then increases as the miles per hour increase. But the highest level it ever reaches is like 35 percent to 40 percent efficiency. So the goal is to try to keep the engine in this 35 percent to 40 percent range. If you can keep it there all the time, then a car like a Camry will end up getting 50 to 60 miles per gallon. Even the Prius isn’t there yet. Camry hybrids aren’t there yet. But that’s the idea. If you can do that, you can end up getting a lot more miles per gallon. I think there’s a program that the federal government had in the ‘90s called Partnership for a New Generation of Vehicles to develop these kinds of cars.

Around the 1940s, I think it was General Motors that developed the diesel locomotive, which is also electric. Basically they realized that because a train uses tremendous amount of power, they couldn’t use a conventional transmission, like a car has, to transfer enough power to the locomotive’s wheels. So they used electricity to be the transmission. They had a giant diesel engine to run an electric generator and make electricity. From there they converted the electricity through an electric motor that drove the wheels, which didn’t need to have switchable gearing like a truck or a car.

In the early days, meaning the late 1900s, many cars were steam-powered. With a steam engine, you needed to burn fuel outside of the engine. Basically, you burned the fuel and made pressurized steam. That ran through an engine, which converted it through pistons to rotors that drove the vehicle. The thing was that you had to carry around all this water with you, and the water had no use other than as a propellant. It was a lot of extra weight that you didn’t need. I think near the end of the steam vehicle’s run, they’d made the process slightly more efficient. But there was still a lot of dead weight one had to carry around. And the only feature of it was, it enabled you to burn things other than oil, such as coal or wood. But it ended up being a larger mechanism and more bulky than what you have with the gasoline engine. There were a lot of electric-powered vehicles early on. Initially, they competed with gasoline cars and actually worked better. But as gasoline engines got more developed, they took off because they had a lot more range, and you could fill up with gasoline in a minute and a half. It’s the world’s most awesome fuel. Initially the stuff was bubbling up in farmers’ fields and killing all their plants. That was crude oil, and they thought it was waste. They looked at their land and saw this tarry, awful stuff. But at some point they realized that they could distill it, and be able to get various lighter-weight petroleum products out of it, hydrocarbons out of it, like gasoline or kerosene, diesel oil—all that is much lighter-weight grades than normal crude. They had been killing whales for whale oil that lit lamps, when they realized, ‘Hey, we can distill this stuff 32

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They also started to realize that oil was really good fuel, because it has a tremendous amount of energy. If you look at electric vehicles, one thing against them is, you’ll never have something that is the equivalent to the efficiency of a gasoline-powered car. Electric cars need so much energy to go. You can fill a tank of gas in two minutes on which a car can go 300 miles, but to charge an electric car in two minutes so that it could also cover 300 miles, would take the equivalent of the output from a Diablo Canyon nuclear power plant. So you look at that and you say, “Man, electric vehicles don’t make any sense, do they?” Though they might not make sense from that standpoint, they do make sense if you don’t need to charge the electric vehicle in two minutes. If you can let it charge overnight, then an electric car is more realistic. But you might not want to have electric vehicles that have really, really long range, because again, that sucks up a lot of power. I’m a proponent of what’s called the plug-in hybrid approach, where you basically take a vehicle, such as the Toyota Prius, and you put a large battery pack in it for a 30 or 40-mile range, and then the car doesn’t need gasoline at all during that commute, that would take care of 90 percent of people’s needs. And charging the car overnight wouldn’t be a major burden. It also wouldn’t put a major burden on the power plants and utility systems. Since electricity does not come from oil, that would help us achieve our goal to reduce oil usage. Very little electricity comes from oil. Unfortunately, a great deal of it, on the order of 51 percent, comes from coal. I think 20 percent or 30 percent comes from nuclear power. About 10 percent comes from hydro, and the rest is various other elements—natural gas might be 10 percent or maybe 20 percent. I don’t know the exact numbers. Unfortunately, only a very small percentage right now comes from wind and hydro, which are basically our best renewable energy sources.

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But there’s not a lot of places you can put dams to get more hydro. There is the ocean. You can take energy from the waves of the ocean or from the tides by letting the water roll back through turbines and make power that way. I’ve heard of ideas like that. But the commitment to exploring these options rises and falls with gas prices. The desire to move away from crude oil really took hold in the mid-to-late ‘70s, with the OPEC oil embargo, where there was a major push towards developing electric vehicles. They were developed along the lines of other electric motors built for industrial use. For instance, forklifts and golf carts have used electric motors for a long time. They basically took those technologies and tried to make electric vehicles. And a lot of research programs sprang up around that time. A guy who used to work at my company, Wally Rappel, built an electric car in the late 1960s. At the time, he was a student at Cal Tech, where he instituted a race between Cal Tech and MIT to race electric vehicles across the country. It was called the Great Electric Car Race. Cal Tech apparently won by half an hour. After that, Wally built various homemade electric cars, which he drove. Various people have had homemade electric cars that they’ve driven around. Some of that is covered in the movie Who Killed the Electric Car? It was back in the early ‘70s, that the Department of Energy put up a lot of money for building these types of vehicles. Various auto companies also got involved in building prototypes. And then Ronald Reagan came into office and the solar panels that were on the White House got pulled off, and anything dealing with renewable energy was gone. So then in the late ‘80s, my company, AeroVironment— I don’t know if we approached General Motors or they approached us—but somehow we got involved in building a solar-powered car called the GM Sunracer. It was actually more bicycle-like and very aerodynamic—and it raced across Australia, something like 3,000 miles. It wasn’t the most practical car, and it wasn’t the very comfortable thing to sit in. But we built it for one specific thing: to get from A to B. We won the race, beating the nearest competitor by a day and a half. After we won the race for General Motors, which had

earlier turned down our unsolicited proposal for building an electric vehicle, they basically allowed us to resubmit the proposal and funded us. This was around 1990. Within nine months, we’d built an electric car that could do zero to 60 in eight or nine seconds with a 100-mile range or so. General Motors really liked it. Roger Smith, of Michael Moore’s Roger and Me film, saw this car and thought, “Hey, this is a really cool thing.” I think it was Earth Day of 1990 that he took this car and said, “General Motors is gonna commit to building electric vehicles.” I don’t know if there was a connection, but he was fired soon after. Around then, the state of California, with it’s huge smog problem in Los Angeles, saw that General Motors was going to come out with an electric car, and set a mandate that by 1998, two percent of the vehicles sold in the state would have to be electric with zero-emissions. So then the auto companies, General Motors and all the other companies were being forced into building electric cars. They said, “No, we don’t want to do this! We want to build what we’ve been building. We want to build SUVs. Bigger, better.” I don’t know about better, but bigger. Gasoline was getting cheaper at that time, which tends to take the resolve out of finding an alternative. So General Motors and the various auto companies starting fighting as hard as they could against the mandate. They took California to court, saying, “You can’t do this.” Eventually California decided to remove the mandate. They delayed it and delayed it, and pretty soon the Electric Vehicle mandate was gone. And the way they did that is, the auto companies said, “We have this great idea: hydrogen. If you remove the mandate, we will build hydrogen-powered vehicles, hydrogen fuelcell vehicles. These are the greatest things around. It’s like, you burn hydrogen, you get water, it’s really clean, and we’re gonna do that. The future is hydrogen.” They convinced a lot of people of this, and managed to get the electric mandate repealed and the zero-emission-vehicle mandate repealed and replaced with some unknown whatever in the long-term future. Still, there were a bunch of electric vehicles built in the mid-to-late ‘90s such as the EV1. Honda also had a vehicle, Chrysler had a vehicle. Then the auto companies managed to get rid of the mandate, so they no ABILITY 33

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longer had to sell the vehicles. And they convinced everyone that there wasn’t a demand for them, although apparently there was a long waiting list for EV1s— orders which General Motors never filled. Then Toyota came along and said, “Well, you know, gasoline’s getting kind of pricey, and we did a lot of electric-vehicle work before. Why don’t we build the Prius?” Although it basically is an electrically driven vehicle with a gasoline engine, it gets you 50 miles per gallon and doesn’t have to be plugged in Now you look at that and you think, what can you do to improve it? You can make it into a plug-in hybrid, such that you don’t need to use the engine all the time, and you can use the electric-energy storage to greatly increase your gasoline fuel economy. There’s rumors Toyota’s thinking of doing a plug-in. You’d still use gas, but if you take it to the point where you only use the gas after you’ve run out of electricity, then you have a scheme where you have a smaller battery pack. Because the thing that’s hurting electric vehicles is the huge batteries they have, the cost of those batteries and the charging. So if you do a smaller battery pack and can charge it quicker, and the battery cost isn’t as high, you can make an electric vehicle that takes care of your commute. If you need to go beyond that, say, you need to drive somewhere farther and back, then you can start burning gasoline to do that. But 90 percent of the time you can just use electricity for it. And GM, at the Detroit auto show, came out with a vehicle called the Chevy Volt, which is—I don’t know too many of the specs, but it’s supposed to be a plug-in hybrid. I think they said the Volt’s estimated arrival time is something like the next five years, 2010, maybe, 2012, something like that. What GM is saying that is different, I believe, is that they’ve got the means to make money with the car. Assuming that they can sell fuel-cell credits to the auto companies, and if a fuel-cell car costs $250,000 for them to build, maybe they can get a $100,000 credit. Something like that. It might be worth it to the auto companies to pay them for this. Then they can reduce the cost of the vehicle that they’re selling, so they can use it for kick-starting electric vehicles’ sales and get their volume up. So that’s basically what their idea is. I don’t think there’s anything revolutionary in what they’re doing. They’ve got really good battery technology that has a lot of power, so they can get very good acceleration out of it. The EV1 also had a lot of power. While Toyota has been developing electric vehicles, the Detroit auto companies have been saying that they don’t want to get involved because it costs too much, and they can’t make any money. Here Toyota is making money on the Prius. Honda’s got a similar vehicle. Both of these companies are figuring out how to produce these 34

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things in high volume, as well as how to make them more efficient. It’s worth figuring out since electric or mostly electric cars would get us off of foreign oil, so we wouldn’t be dependent. The negative is that you’re relying more on coal, and it’s the worst of the bunch out there, from the nasty, CO2 emissions standpoint. From what I understand though, even though coal is bad, if you look at the carbon emissions, it’s still a better fuel source if you’re running a plug-in hybrid vehicle. You end up with fewer carbon emissions with a plug-in than if you’re burning gasoline—or using hydrogen. That’s the other interesting one. Because it takes four times as much electricity to make hydrogen as it does to run an electric vehicle. Actually, from the standpoint of CO2, a hydrogen-powered car is worse than a gasoline-powered car, even though it sounds like it’s the best stuff in the world, because it burns and makes water. It just requires too much energy to make the hydrogen in the first place. There is an alternative to coal that is cheap and available now—basically it’s wind. There’s a tremendous amount of wind in the Dakotas and Montana and places like that. So if you set up windmills throughout the West and Midwest, you could power the entire country off of them. They’re starting to put more windmills out at a similar cost level to what it costs to build new power plants. So from an economic standpoint, they make a lot of sense. There are certain issues with wind, however. It fluctuates, yet we need to be able to rely on a steady power source. Though, if you have windmills spread over a longer distance, that issue should compensate for any deficits. One place will have wind, the other place won’t, and it ends up evening out. The other thing is, these places may be a long way away from where the power is ultimately used. So you end up having to transmit it over long power lines. That’s another issue. They need to come up with energy storage solution for the power. Windmills also generate a less tricky form of hydrogen, which you can then pipeline or transport. You wouldn’t necessarily need to have a major power grid at the source. Some people have championed biofuels, which I think can be good, but like ethanol or hydrogen, they can require more energy to make than you end up getting out of it. Some speak of using vegetable oil, which is also a good idea. The problem is, there isn’t enough of it. Then there’s cow dung—again, a good idea. But again, can you get it in enough volume to make a real impact? Although biofuels, in conjunction with a plugin hybrid, can make a lot of sense. That would mean you don’t need any gasoline at all. The bottom line is, we’ve got to keep on our thinking caps.

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We also wanted to get a perspective from a leader in hybrid manufacturing and technology. Next we spoke with Toyota’s Senior Strategic Planner for Advanced Technology, Jaycee Chitwood: Cooper: Where do you think we are right now in terms of alternative fuels, and where do you think we’re going into the future? Chitwood: I think we’re definitely at the beginning of what will be a more diversified fuel use in terms of automobiles, but in many decades we’ll still be dominated by gasoline. Cooper: You’re one of the leading companies with hybrid technology. Was that a strategic plan or just good timing? Chitwood: Yes. (laughs) I think one of the strengths that we have at Toyota is the ability to respond to current market needs but also to look 10 or 20 years out. The Prius’s development was a long time in the making. Toyota’s been selling it for almost a decade now; we’ve been selling it in Japan since ’97. So yes, at that time there was not an emphasis in the marketplace on fuel efficiency and alternative fuels, but just looking out into the future, and looking at energy supplies, growing population, air-quality issues, greenhouse gasses and global warming, it was apparent that there would be a time when alternative fuels were going to be important. And so yes, there were factors that played into the success of the Prius. The rising gas prices of the last year definitely helped. But we were thinking of it years before those factors came into play. Cooper: How did they fare in Japan? Chitwood: I don’t know. I do know that initially in the U.S., it was a process of growing the market. The first people who purchased the Prius in the U.S. purchased it over the internet, sight unseen, based on wanting this new technology and understanding what the benefits

were, while relying on Toyota’s reputation. But yes, it’s definitely been a progression. I think the first year we sold 12,000 or 13,000 Prius in the U.S., and we sold close to 20,000 last month. So it wasn’t a humongous overnight success when it was first introduced. Cooper: Where do you think Toyota is going with this? Do you think the company will eventually produce more and more, if not all fuel-efficient vehicles? Chitwood: Oh, absolutely. Our plans are to continue to introduce hybrid technology into, we hope, all of our models. Our goal is to sell a million hybrids a year globally within the new decade. So yes, our development goals for advanced-technology vehicles include fuel efficiency, energy diversification (or reducing energy use), improving air quality by reducing CO2. So we have a three-fold, overarching development goal. Cooper: Will you be using fuels other than electricity and gasoline? Chitwood: Yes, we’re looking at hydrogen, we have a very heavy investment in fuel-cell research and development, but we’re also looking at plug-in hybrids, while exploring E85, biodiesel and many other things. Again, that’s one of the strengths of Toyota, being able to satisfy the current market, and also look ahead to the future and the fuels that will be needed then. Cooper: It must be a challenge in the research department to consider all the different directions that one could take, and figure out where to put the research monies. Chitwood: You’re right. It’s challenging. If you were to ask us What is the fuel of the future, we would honestly have to say we don’t know. We have some informed choices that guide our development. But it’s almost impossible to ask people about fuels or cars that don’t yet exist. So it is doing the research, looking at many, many different data sources, societal trends, environABILITY 35

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mental trends, regulatory trends, geological trends to inform the direction we take. Cooper: To what extent do you consider the environmental impact in your strategic plan? Chitwood: We consider it at every stage of our business. In fact, we have a system called ECOVAS, which it stands for eco-vehicle assessment system. It uses lifecycle assessment as its core and evaluates every stage of vehicle manufacturing. So from the time you’re mining the ore, the minerals, turning that into a part, turning those parts into a car, assembling it, getting the fuel to the vehicle, burning the fuel, maintenance of the car, how many times you have to replace the oil or the tires, and then ultimately the end of the life of the vehicle. So in our manufacturing, we have very aggressive environmental goals that include our sales and distribution. The majority of our plants in North America are zero landfill waste. We have a five-year environmental action plan that covers all areas of our business. So it is definitely a core value of the company. Cooper: Maybe I haven’t asked the right question before to other companies, but I’ve never heard of a company that thinks through the whole cycle of a product, the way you just described it, and not just the product itself. Chitwood: We have a self-created, global-earth charter that was initiated in 1992, where Toyota codified all of these values within the company, put it down into our charter, which defines and informs all of our business decisions. Cooper: So there’s a part of your charter that has you consider everything, whether you’re purchasing a vanity mirror or opening a plant? Chitwood: Exactly. Toyota has a history of having very long-term, close relationships with our suppliers. So, because of our ability to influence their decisions, this filters down to our supplier base as well. It’s not enough to just do these things ourselves, we want everyone we purchase from to be implementing sound environmental practices as well. Cooper: Where does this directive come from? You’re based in Japan, correct? Chitwood: Yes. The company is based in Japan. Where I am is actually Toyota Motor Sales, the marketing and sales arm of the company in the U.S. Cooper: I think it was your plant in Kentucky where we interviewed one of the Backstreet Boys, Kevin Richardson, I believe. He’s from Kentucky, and very, very into the green movement. He was very impressed with Toyota’s plant there. They actually do tours that talk about how green their plant is.

Chitwood: It is very impressive. I just flew in this afternoon from an event in Austin put on by the Texas Commission on Environmental Quality. Our head of environment and safety for North American manufacturing was giving a presentation, and whenever he talks he quotes statistics about how many tens of thousands of square feet the plant is, and how nothing goes into a landfill. And people are just amazed. It is an amazing achievement: Zero waste. Cooper: How do you get your customers’ cars back in the end, to make sure they’re recycled? Chitwood: Part of it is planning which materials to use, looking at recyclable parts, biodegradable parts, also making sure that there’s an economic incentive to bring those parts back. So for example, there is a very controlled process for recycling the batteries on our hybrid vehicles. There’s also a hotline number on the battery itself, and a kind of reward, if you will, for turning the battery in. So within the sales process, the dealers work with the customer to inform them. But just in case something slips through, there’s the hotline and the reward. So we go through all those methods making sure that certain parts that need to be recycled come back to us, so we can create more recyclable and biodegradable parts for the vehicles. Cooper: I heard that many parts are edible. Chitwood: (laughs) Maybe, but they don’t taste very good. You’d need a lot of hot sauce. Toyota Tips to Maximize Gas Mileage 1. Plan ahead; combine several short trips in order to minimize cold engine starts. 2. Accelerate at a moderate pace. 3. Monitor highway speed. Fuel economy suffers at speeds higher than about 65 mph and drops significantly above 70 mph. 4. Regularly check and maintain proper tire pressure. 5. Don't carry unnecessary loads. Excess weight reduces fuel economy. 6. Use the air conditioner and defroster only as needed; both reduce fuel economy. In addition to the tips above, two more steps Prius drivers can take to increase fuel mileage are: 1. Monitor the flow of traffic to plan your moves well ahead. If traffic is slowing, use moderate early braking or coasting instead of hard braking. 2. In slow-and-go traffic, accelerate to the desired speed, then lift off the throttle to maintain that speed under electric power. You may be able to sustain speeds in the 20-40 mph range without engaging the gasoline engine. www.toyota.com/vehicles/future/hybridx.html

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ked and as y a d r atar, I e Satu up on in Doha, Q knowing e m d calle ence ” not azine, ility confer the world, why I g a m r o en ab ne this fi ational dis n’t miss it f atar,” or ev leading m o r f n not a utism oper, rd, “Q would a inter het Co d to go to , of course, nce the wo d away. I’m tion like “A user C n e u l r h a te “Sure a wor prono elchai I wan rganiz me if iately said, ted, how to ering a half estigious o bled, a whe e a book t r d imme ar was loca august gath n’t run a p know, disa cently wro sability i t e o u r a d d n o a d I Q e y n Doha, ited to such or activist; E. I’m just, re books a a babe in th person” e r e h u d e v e P w t lt be in isable lchair , SCO eel lik dvoca op-cu should disability a tish charity ows and p de, I still f e saying “d d of “whee ing the a k h a i world ” or the Br rites TV s after a dec al gaffes li rson” inste casion, rais , I tell w b s e n r k p e o o e a v r h v n e here i E a o c w g Sp years r paralysis. mbarrassin r “wheelch dicapped” ot. I’m new e Augean n e t r h n o e t te a sh fo aking in ear life af bility” ged in ord “h about . I’m still m with a disa use the w gnoscente ot yet enga o o s wood of “person en known t disability c abled and n d e i d a b e d e t g s econd en nd ights. ins The S ote the ’ve ev ry right-mi to just bein disability r “ I ” d . e r l e l u e e r us ally ca —was, to q ation of s of ev ll getting us ganizing fo e m l r k o f c ” a i h eeds sform o year— and or I’m st e this th Special N t in the tran the way pe c them; politicking n e r e i f r conf ren w e agen ent” in peak. task o e Qata m on Child itive chang change ag ble, so to s f the h t f o e ta os ru of ve as a p positi rt at the e them nal Fo nches But th l Internatio light media book is a “ ave a place d from 54 i d a good pa s l y a i n Annu re, “to high e I hope m at I might h ng the wor e I had spe e about th e i n s u p h c e o t u broch ity.” Beca ed, I saw avel, to se a idea. Sin not make about to ex l i l r i t b y d e b a r h disa w the dis , dying to r great me taries, w ry we we n t e ple vi was, and am had anothe ng docume stern coun a t i t e I E i r h d e l C aul dw An s, dd end, P d on i d. Plu making an exotic Mi r n f u d o l r o e g barke r and career ion th raphe yself—em of my not to ment g o t a and m cinem event, first-hand? trip Chet, oldsmith, — r e d this nating c u n G o a f e f e rien n c i o re arty fasci feren lumb is con . Qatar is a tural junctu one little p roducer Co h r t u o — s l o i é a cu every ay th clich And s ith, field p . t me s end an old g speed and at included modest m r e s l a t d , l a d o e Q r G of th te ob nin a oad to ncoun oadening, t lf at lighte s gathering n, to people f a visit to e e The R w e l s t r i s e a a t a b l s i t h t i c mind orldas in i ribe w eat Br hered enting I desc e genuinely cess of inv ce, a truly w ister of Gr Brunei, w ation I gat e r o f o to in n er rm Be the pr onfere d info Ghana rime m ined w comb a country in est. The c ife of the p ation from images an W e al place, n East and , QC, the w ability educ ocessing th Speci eika h t i r e w h s t i e p h n o d e betw herie Bo hildre Highness S to, nes of r me. I’ll b e. C i l r t o C n f t o r r i o m m f fr fro Cente nage of He compare n the d, at least years to co h o a l s l n a o a f o t n r r la fo me Sha pat ing nture e new by the d under the I have noth d e r strang e whole ve o s e . t r h spon crea Qata from t m was nal facility st Lady of u r o f l r o iona d educati e Fi ternat ed, th e The in an advanc r Al-Missn , e Needs Bint Nass h a z o M

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personally, but guest speaker Anthony Kennedy Shriver, related to all the other famous Kennedys and Shrivers and chairman of Best Buddies International, an outreach program for kids with intellectual disabilities, said Shafallah was without a doubt the finest facility of its kind in the world, “an enormously important symbol [for] what it represents for the whole Middle East and what it represents for the world.” My guess is that he should know. He’s probably toured every such facility out there. What makes Shafallah so special? A member of the Shafallah staff, the Assistant Director of Training and Development, Sarah Hannibal (more about her later), briefly ran it down for me. One reason, she noted, was “the immense amount of support and backing we receive from the Emir and her highness Sheika Mozah.” It’s a social priority in Qatar to help kids with special needs. I don’t know this for a fact, but my guess is that few other regimes in the region have this at the top of their “to do” list. The Qatari government is small enough, and rich enough, to focus on a priority like this and pay for it. The layers of bureaucratic entanglement are thin. Secondly, the teachers are well-trained, according to Sarah, many getting in excess of 30 hours of professional development training every year. The in-house staff represents over twenty-five different countries and the center is constantly bringing experts in and sending staff out to other countries to learn more. The forum itself is just one such occasion for the center to build cooperative programs with groups like “Autism Speaks” and “Best Buddies.” It seems to be setting itself up as the nexus of a world educational network, not unlike a medical research facility like the Cleveland Clinic or Memorial Sloan-Ketterling Cancer Center. Then there is the place itself. The Shafallah Center is a visually stunning site, an expanse of low-rising white-white buildings in a compound on the edge of Doha. Like everything in Qatar, it feels like it was Below: Her Highness Sheikha Mozah Bint Nasser Al-Missned at the Shafallah Center for Children with Special Needs

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built yesterday. Its pristine chalk white walls are covered with art work by the children whom it serves and the endless archways and marble-floored entry rooms make you feel like you’re weekending in a royal desert retreat. Even the lecture hall is exotic, a seamless round white dome where images could be projected on every surface. This is not the pre-fab, fake-wood-siding “special ed” bungalow situated behind P.S. 14. This is a palace of learning. But then again, it fits right in with the emerging metropolis of Doha, not like any city you’ve ever seen. Qatar is a thumb-shaped emirate situated along the coastline of the Persian Gulf and Doha is like an urban mirage rising at the edge of the desert. Think of the meteoric rise of Las Vegas in the era of Bugsy Seigel, from desert dust to the Stardust in a roll of the dice. But this isn’t a garish gambling Mecca (no Islamic pun intended); this is a new world city. Hundreds of skyscrapers are under construction, with a goodly percentage of the world’s building cranes on lease. To our eyes, it seemed like they were building two identical 50-story edifices at every site, like the contractor had talked them into a two-for-one sale. At one point Paul shot the city at dust from across a small in-land waterway. As a thousand lights from a forest of half-built towers blinked on at once, it didn’t seem real. It looked like some cinematic computer animation that Hollywood created for a city on the moon. Currently, Qatar has no unemployment, no observable crime, no smog, no graffiti, no gangsta rappers, no public drunkenness, and no car that we could find—and we looked hard—built before 1985. And electricity is free. More than one person told us that Qatar had the highest per capita income in the world; it just passed Luxembourg or something. Seventy-five percent of its roughly 800,000 inhabitants are guest workers from places like India, Malaysia, and the Philippines—the band playing in the bar at the Sheraton Doha, one of the only places to drink in this alcohol-free country, was all Pilipino— called “Life After Dark”—and they did a mean rendition

Below left to right; Dr. Zorka Parvanova, First Lady of Bulgaria; Mrs. Suzanne Wright, Co-founder,

Autism Speaks; Mrs. Vivian Fernandez del Torrijos, First Lady of Panama; Ms. Ernesta Redi;

Dr. Liri Berisha, First Lady of Albania; Mrs. Argita Malltezi; Mr. Manuel Campos; Mrs. Jeanette Kagame,

First Lady of Rwanda; Ambassador Luis Gallegos of Ecuador

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of the 70’s pop classic, “I’d Really Love to See You Tonight.” The other 200,000 denizens are native Qatarians and they are the only people allowed to be citizens to date. They run things. And they are no slouches at it. Okay, the place is not perfect. The traffic did seem to be headed toward grid-lock status, there were very few accessible hotel rooms in the whole city, and you probably can’t walk around saying slanderous things about the powers that be and last long. But women can drive, vote, and seemed to be in positions of authority, at least around Shafallah. That certainly didn’t fit the common stereotype of a Middle Eastern society. Dr. Ronald Brown, an American education specialist attending the forum who lives in nearby Abu Dhabi and is a longtime Arab-watcher, explained the particular appeal of the Qatari experiment. He said that among all of the Arabs he had worked with, the Qatari leadership was the most “adventurous” in their vision of a future society. Besides a forward-looking institution like the Shafallah Center, they had also created an “education city” within Doha to house satellite campuses for American universities like Texas A & M, Georgetown, and Cornell’s Weill Medical Center. They are actively pursuing cross-cultural pollination through sponsoring international events like the 15th annual Asian Games. And Qatar is also home to what could arguably be called the Voice of the Middle East, the Arab TV network, Al Jazeera. Even some high-ranking Qatari officials mumbled about what they perceived as Al Jazeera’s blend of journalism and opinion—not that any American network would ever be guilty of such sins— but no one doubts Al Jazeera’s increasing power and influence in shaping the New Middle East. The term Dr. Brown kept using to describe the whole gulf Arab culture was “gracious.” Arabs, he said, have a long tradition of hospitality, generosity, respect for others, and personal warmth. There was not one Arab, at the conference or on the street, that didn’t come across this way. Maybe we were gullible victims of a giant con job, but I don’t think so. Just the word “Arab” is scary to most Americans. See a guy in a traditional head cloth (called a kufiyya) and black coils (called the agal) walking around the local mall and the general thought bubble (or at least my general thought bubble) is “terrorist,” “terrorist sympathizer,” or at the very least, “freedom hater.” “Gracious,” “kind,” “thoughtful,” “generous,” and you know, “just another human being,” is not the momentary assumption. Well, for the sake of the emerging world order, think again. The first Arab we hung out with was Rami, our driver and guide on a desert safari on our first day in town. He was born in Lebanon but had moved to Qatar at age one. He was a wild man; his nickname was “The Desert Fox.” Along with a caravan of ten other SUV’s, he

drove us down the highway until it just stopped in the middle of nowhere. While the drivers deflated their tires for desert traction, the rubes rode around on the back of a camel and felt like Omar Sharif for about a minute and a half. Then, as Rami played the Backstreet Boys on cassette in his souped-up four-wheel-drive Nissan, he assaulted the endless sand dunes south of Doha like a skateboarder in an empty swimming pool. On the way out to the sands, he pointed out the single pipeline that brought natural gas from the outback of Qatar to the coastal refineries and made this specter of a world-class country possible. The Shafallah Forum opened with a speech by UN Ambassador Luis Gallegos of Ecuador outlining an important global bench mark in the recognition of people with disabilities—the recently approved UN Convention on the Rights of Persons with Disabilities. Though I got lost in all the bureaucratic verbiage about “protocol,” “process,” and “implementation,” it was clear this was a new day for the global disability community—a paper declaration that set a world standard for the fair treatment of the disabled. The Sheika herself was present for this proclamation, the Qatar equivalent of the President throwing out the first baseball of the season. She was stunningly beautiful, completely accessible to anyone who wanted to say hello, and clearly there for more than a photo opportunity. For whatever reason—and we could never quite find that out—she had a passion for working with children with special needs. Among all the heady talk about a worldwide campaign to improve the lives of the disabled, a number of participants with disabilities joined the gathering and brought the whole thing down to street level. After the first evening’s dinner banquet—the food at this event deserves its own gourmet chronicle—a young lady stood up and said we were about to watch a movie about a 39-pound man. No one would admit it under oath, but half the audience was no doubt itching to slip away and go check out the Pilipino version of The Shirelles in the “Drinking Hole” on the second floor. (The preferred pre-dinner cocktail in Qatar was fresh kiwi or strawberry juice.) But no one bolted for the bar. We all sat politely and watch the documentary, called 39 Pounds of Love. And we were collectively blown away. That 39 pounds of love, daring, impudence, and unassailable courage is Ami Ankilewitz, a 34-year-old Israeli born in Texas who gets his heart broken in the first reel and then sets out to criss-cross America in search of the doctor who told his mother at his birth that he had only six months to live. Ami hauls around a body with virtually no muscle tissue, given the severe form of muscular dystrophy he was born with, but the man has a heart and will that not only convinced a van full of ablebodied buddies to come with him on his “Easy Rider” escapade, but also refused to give up even in the face of near-death. Ami can move his finger—that’s about it— ABILITY 41

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and he’s a damn good computer animator when he’s not playing out his personal psychodrama about a myopic doctor for two hours. In the end he finds the doctor, straightens him out about the brave heart beating inside every disabled body on the planet, and heads back to Israel to live his life. Another film star, Larry Selman, was also in the house. The name of the Academy-Award-nominated doc about Larry’s life in New York, directed by neighbor Alice Elliott, is called The Collector of Bedford Street, because that is what 65-year-old Larry does—collect money for all kinds of charities, from Aids Walk to planting new trees in the neighborhood. Larry has developmental disabilities and when we saw him in Doha, was also using a wheelchair because of a recent stroke. Did that slow him down? Hardly. Sitting next to him at the opening session, Larry leaned over to tell me that he planned to give the Sheika a nice big kiss, given the chance. He would probably try to sell her a raffle ticket for “Dinners for Two” to support more Greenwich Village clean-up projects. He sold me a couple—hell, he probably sold half of Qatar a couple. Larry is a pint-size force of nature. Ami and Larry were there throughout, taking bows and popping jokes with the rest of the participants, and seeming no more freakish or out of place than Emmanuel, the one-legged young Ghanaian who biked across his native country and ended up getting the nation’s laws changed for the disabled; or Victor Pineda, who wheeled up in his powerchair for the big gala dinner wearing a full-out Arab gown and head dress; or the dozens of abeya-clad Arab women from Yeman, Jordan, Tunisia, or Iraq sitting around the ubiquitous banquet table nibbling on fresh sushi (with no Japanese in sight) or sixteen forms of dessert; or me, a guy in a chair with an Okie accent wearing an “Oregon Coast” baseball hat. As part of our documentary, I approached a table of black-draped Muslim women at one luncheon. This was a first for me. They looked humorless and intimidating until, of course, they opened their mouths. Every one of them shook my hand—it’s a natural, dumb-Yankee Below: Yulia Simonova, Project Coordinator of Perspektiva, Russia; Allen Rucker, The Road to Qatar, USA

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thing to do, stick out your hand even where it is frowned upon—except one young lady from Tunisia, who politely declined. We filmed each woman as she briefly told her story. One Lebanese woman, Moghitha Alkibsi, was moving from the states to Qatar to work with disabled children because she thought the need was much greater in the Middle East. Another woman, an American-educated professor from Brunei, peppered me with questions about how to write a book about her work. And one woman from Iraq, as Paul remembers vividly, took care of 150 autistic children a day in her own home, along with her own autistic child. She was currently away from Iraq because her brother’s whole family had been kidnapped for ransom. The ransom had just been paid, so she was headed back after the conference. Like many people at this gathering, you could have done an entire film on her story alone. You get the idea. Under the broad banner of disability awareness, the conference was a coming together of people you would have never met otherwise, all of whose “differences”—physical, cultural, religious, sartorial— just faded in the light of a common cause and a completely hospitable environment. Tolerance is often just a matter of open-minded exposure—I never knew a quadriplegic could be sarcastic until I met a sarcastic quadriplegic. Or, I never knew that severe-looking Arab women with no makeup were so approachable until I approached one. Direct human contact—what a concept! Meanwhile, the formal presentations continued, both ceremonial and substantive. The First Lady of Great Britain—Cherie Booth, QC, wife of Prime Minister, Tony Blair, and co-chair of the forum—was a star attraction, along with a whole contingency of First Ladies from Albania, Rwanda, Bulgaria, Panama, and the European Union. Speaking for her own population, Mrs. Blair outlined the rise of childhood disabilities in even the most advanced Western societies. “The latest figures available in the UK,” she said, “show that in 2003, there were 770,000 disabled children under the age of 16, one in 20 of the total child population of the country.” And the increase is precipitous—62 percent in

Below: left to right; Souq merchant; Chet Cooper; Allen Rucker in his new outfit; Paul Goldsmith; souq taylor; souq merchant

Below: Allen Rucker taking a test drive

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the last thirty years. You hear stats like that and “children with special needs” ceases to sound like a minor social phenomenon. It sounds like a health and educational issue of the first order. The most startling news about disabilities came from Suzanne Wright, founder of the American organization, Autism Speaks, and the grandmother of an autistic child. Calling autism an “urgent global health crisis” affecting tens of millions of people worldwide, she said that in the US alone, autism now affects one in every 150 American children and an astounding one in every 94 American boys. From 1992 through 2003, the rate of increase among autistic children was 800 percent. Every twenty minutes nowadays, a child with autism is diagnosed in the US. And the divorce rate among their parents is 70 percent. What is going on here? You don’t hear the NBC evening news—even though Mrs. Wright’s husband, Robert Wright, used to be the president of NBC—talk about the national epidemic in autism sweeping the land. For all of the “ripped from the headlines” dramas on American TV, I can’t remember one in recent memory focused on autism. (People with disabilities as a whole are a rarity on American film and TV, period, but that’s a whole other rant.) If you are over fifty, and you know who you are, you remember the polio epidemic of the 1950s that was a ubiquitous daily news item and an ongoing national conversation, much like Iraq or the death of Anna Nicole Smith is today. At the time, polio hit about one in every 3,000 Americans. The rate of autism, to

repeat, is one in every 150 American kids. And there’s no Dr. Salk with the magic vaccine. At this point, they don’t even know what causes autism. Mr. Shriver, announcing himself in jest as Maria’s brother, spoke movingly about how he came to dedicate his life to working with those with intellectual disabilities after his personal experience with his Aunt Rosemary Kennedy, John and Robert Kennedy’s disabled sister. And like everyone who stood at a podium, he praised Her Highness Sheikha Mozah for her “professionalism, her fortitude, her dedication and her perseverance” in creating the Shafallah Center. No one at this forum was about to argue with him. Okay, we didn’t hit every workshop and meet-and-greet on the schedule. We had to fool around a little, Dohastyle. Late one afternoon—the city shuts down from 1 to 4 because of the usual heat factor, though it never felt any hotter to us than Santa Monica in July—we took off for what appeared to be the oldest, funkiest Arab market in Doha—called a souq—though we found out later that it was only built a year or two before. Even the old stuff is new in Qatar. This indoor mall of sorts was a cavernous weave of dark hallways with hundreds of little shops selling all kind of dry goods and spices and men laying around on long benches smoking hookahs as the sun set over the Gulf. They weren’t sitting, mind you, they were lounging horizontally in their long white robes, serenely puffing away and no doubt chatting about their price of gasoline (currently about 35 cents a gallon, we were told). ABILITY 43

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Our mission at the souq was to purchase a traditional Arab shirt for the well-dressed wheelchair user. Since few of the merchants spoke English, I kept pointing to my polo shirt and saying “Shirt, Shirt.” They directed me to a place where an avid fellow tried to sell me a “Rolling Stones World Tour” T-shirt. We finally found the right fabric merchant and the right floor length shirt/gown. After another round of hand signals, the merchant just cut it off at the waist and stitched it up right in front of us. I ended up with the head scarf, black coils, skull cap, white pants, the whole Arab street style, and I still looked like a yokel on holiday. But it was very cool and comfortable. Driving back in a cab, Paul spotted a sign reading “Bed & Bath” and quipped that the full name was “Bed, Bath, & Burkha.” The marketplace was filled with many mys terious Burkha-clad women—okay, maybe they were “abaya”-clad women—but certainly not all. There are burkhas, or burqas, abayas, chandors, hejabs, and niqabs—it all gets very complicated. In Qatar, it appears that both women and men can wear whatever they want, as long as it’s modest and respectful of others. No shortshorts, bras as outer garments, or wife-beater T-shirts, please. Even with this caveat, the standards are loose and liberal compared to a place like Iran, where fashion police hand out warning tickets if a woman is wearing her head scarf too loosely. Another side trip, arranged by Columbine, took us on a tour of Al Jazeera headquarters, something we had hoped for from the moment we hit town. If this cable network, widely defamed by the likes of Donald Rums feld and other Iraq war engineers, was in fact the house organ of Osama Bin Laden, then it’s filled with the slickest, most ingratiating conmen on earth. From our “naïve” Western view, the whole operation seemed open and un-paranoid—can you imagine walking into the Fox News headquarters and being allowed to shoot

video freely? The staff seemed like a bunch of earnest, hard-working young people who thought journalism was important. Hallways were peppered with idealistic aphorisms by the likes of Nelson Mandela and the always-quotable Bob Dylan. The place was, to say the least, American-friendly. Our soft-spoken Al Jazeera guide, Abdullah, led us right into the vast newsroom a glass panel away from the ongoing live news broadcast and we walked up to whomever and just started talking. One producer had come in on his day off to run down a rumor about the death of Hosni Mubarak, the President of Egypt. A young woman reporter, her neck in a brace because of a recent horse accident, couldn’t wait to get back to the war fronts of Somalia or Palestine. She had no ideologi cal ax to grind, at least in the 20 minutes we spent with her. She was just passionate about her job—risking her life to deliver the news. She did wonder why at least the English version of Al Jazeera wasn’t available in the US. We didn’t have an answer. After three days of workshops, speakers and even a “media blitz” where various media representatives manned little booths to promote their film, publication, or foundation, the conference wrapped up with… you guessed it… another sumptuous meal. During one of the last gatherings, we ran into a young Muslim woman I mentioned earlier—Sarah Hannibal—who became, at least for me, the person who made the most lasting and profound impression. She talked like an American, dressed like a Muslim, and devoted her working life to the education of children with special needs. She was the whole package. Sarah was born, raised, and schooled in the great state of Texas. Having been a special-education teacher in the states, she answered an ad for an autism specialist in an education magazine and upon hearing the country she

Inside the Headquarters of Al Jazeera are several displays remembering lost employees. The original Al Jazeera channel was started in 1996 with a $150 million grant from the Emir of Qatar, Sheikh Hamad bin Khalifa. It also happened that twice (once in Afghanistan and another time in Iraq) the Al Jazeera offices were bombed by US Air Force in which Al Jazeera news reporters died.

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was being invited to, had to ask her friend the geography teacher to locate it on a globe. She knew no one in the Middle East when she boarded the plane to come to Qatar. She met another American woman coming to Shafallah at Heathrow Airport in London. That woman stayed for a year, then returned to the US. Sarah never left. Within six months she decided to convert to Islam and soon after, married a Qatari man and started a family. When we met Sarah at Shafallah, she was in a traditional black gown/abaya and head scarf/hejab. Only her face was exposed. It was a bright, inviting face. Paul thought she had the warmth and spark of Sally Field in The Flying Nun. She was very traditional in her social interactions—she wouldn’t shake my hand, which I found to be very non-Texan, but I got over it quickly. Sarah was a one-person extension course in “Why Do Muslims Act Like They Do?” Why, for instance, wouldn’t she shake my hand? Because in the Muslim tradition, it is good to avoid unnecessary physical contact between men and women who aren’t married. It is a sign of respect to the family. It is not meant to be offputting, unfriendly, or a matter of hygiene. It is easy enough to convey friendliness and openness with your eyes without physical contact, and it certainly avoids the often uncomfortable and inappropriate intimacy women have to put up with from brutes in the West (my extrapolation, not Sarah’s). Fair enough. No unnecessary physical contact. But why wear monotone, loose-fitting clothing that pretty much cloaks the idea that you are even a woman? Again, Sarah had a simple, straight-forward explanation. First, it avoids the issue of class, much like uniforms at an urban high school. Secondly, when you are not observing a woman’s clothing or body, for whatever reason, you are probably looking at her face, i.e., her. Sarah mentioned studies which showed that men’s eyes tend to roam all over a woman dressed in Western clothing and tend to focus on the facial gestures of a woman dressed in Eastern garb. When you are talking eye to eye with a woman like Sarah, as it became instantly clear, the bullshit factor in the form of subtle social and sexual cues goes way down and you just talk. In a way, it’s liberating for both parties. Sarah loves her new life. She said she felt freer to be herself in Qatar than she ever did in the States. Muslim woman wearing head dresses in the US are often feared and avoided. Their modesty is suspect, like they’re Stepford wives in hejabs taking orders from terrorists. Sarah certainly didn’t seem oppressed or beaten down or fearful, the usual notion Americans have about Arab women after our media exposure to the Taliban. She had a career that she is passionate about, a family, and a religious foundation that gave her life direction, meaning, and fulfillment. The fact that she chooses not to be picked up and spun around by big ol’ Uncle Charlie

every time she visits the farm seemed meaningless in the face of the confidence and compassion she embodied. Confidence and compassion—those are two human qualities shared by a lot of the participants at the Shafallah Forum. God knows your average Qatari radiates confidence—he or she is part of a robust, ever-expanding culture that invites at least passing comparisons to a carbonbased social Valhalla (at least for now). On the other hand, the compassion that brought about the Shafallah Center itself, the Forum, and the open acceptance of everyone from Ami to the First Lady of Rwanda—who knew about that? Again, caring and compassion toward the least powerful members of society is not something that Arabs are known for in the American press. I witnessed the most bracing confidence and compassion of all in the presence of Ami, Larry, and many of the other severely disabled participants. Not arriving at this forum as a seasoned professional in the fields of education or social services for people with disabilities, I’m sure there were a thousand valuable insights and gems of knowledge that totally escaped me. And even though our group shot what will hopefully turn out to be an informative and entertaining video about the whole experience, we weren’t there to do hard journalism, to ask the tough questions about what is “really” going on at Shafallah, Al Jazeera, or in the backrooms of the Qatari Ministry of Finance. We were there to get first impressions, and as your mother repeatedly told you as she dressed you for your first job interview, first impressions count. Impression-wise, this event was a stereotype-breaker of the first order. For all the gold-leafed table settings, the mounds of shrimp curry and chocolate mousse, and the best-behavior friendliness of everyone involved, there was something going on here that transcended the wellmounted international feel-good gathering. There was an ease of association and respect among the rainbowdiverse participants where politics, money, power, and privilege, at least momentarily, had no place. Being disabled, all you really want is for the rest of the world to treat you without prejudice or presumption, to tolerant your difference. It’s not all that much to ask, but for most of the world, including Los Angeles, it’s still a ways down the road. For a couple of days in Qatar, it was business as usual. by Allen Rucker www.shafallah.org.qa

Alllen Rucker is a best-selling author, public speaker and writes regularly for this magazine.

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young boy sits in a dark theater staring wide-eyed. Completely fixated, he is entranced by the flickering images of Dr. Frankenstein’s laboratory. Gripping the arms of his seat as electricity flashes across the expansive screen with a thunderous clatter, the boy gapes as the creation—and his own imagination—come alive. A dreamer is born. While other children were roaming the halls of their homes with their arms outstretched in true Frankenstein style, Earl Bakken sat intrigued by a spark of electricity powerful enough to restore life to the unliving. The pulsating images captivated him throughout his childhood, came alive in his dreams, and became the foundation of many inventions. His fascination with electricity and its capacity to create would not only shape his youth, but ultimately his career. Even today, Bakken is no ordinary dreamer. Credited with inventing the world’s first wearable, batteryoperated external pacemaker, Bakken helped launch the modern medical-technology industry. Through his leadership of Medtronic, the Fortune 500 company he founded and led until his retirement more than 15 years ago, Bakken has enabled millions of people with life-threatening illnesses to be restored to full life and health. ABILITY 47

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Earl’s garage in Minneapolis

Now, in his eighth decade, he is pioneering again and creating entirely new forms of healing. A renowned pioneer, engineer and inventor, much of Bakken’s passion lies within the walls of North Hawaii Community Hospital. Opened in 1996 after nearly ten years of planning, the hospital’s mission was to improve the health and wellness of the people of North Hawaii. The vision was that it would become the most healing hospital in the world. ABILITY Magazine’s Chet Cooper recently joined Bakken in Hawaii to tour North Hawaii Community Hospital and to talk about a life that can only be categorized as remarkable. Sitting together at Bakken’s home, they talk about his dreams, his love affair with Hawaii, and keeping good company. Chet Cooper: Is it true you have a theme song?

numerous life-saving technologies can actually be traced back to the movie Frankenstein? Bakken: (laughs) When I was nine years old, I went to the movies and saw Frankenstein. That’s what got me interested in electricity. Have you seen it? Cooper: I saw Young Frankenstein. (both laugh) Bakken: The original film has a lot of devices with sparks flying. At the time, I thought, “That’s what I want to be, an electrical engineer. Maybe I’ll work with human bodies.” That stuck for the rest of my life. Cooper: Did you first realize your dreams might be coming true when you were working on the pacemaker, or did something click for you earlier?

Earl Bakken: (laughs) “The Impossible Dream.” Cooper: And then is it also true that your innovation of

Bakken: There were a lot of things I dreamed up and then made happen. When I was an adolescent I created a

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1 9 3 4 Age 2: Fascination with electricity, wires, cords, plugs, and connectors began as a toddler.

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Age 9: Built a telephone system that stretched across the street to a friend’s house. The boys scavenged the wire they needed from a blasting operation at a nearby sand pit and borrowed the earphones from Bakken’s Grandma Eva.

Conceived of a series of underground caves with passageways. Drew plans and dug them with buddies. Build a home-made Taser to keep the bullies away. Inspired by the movie version of Mary Shelley’s “Frankenstein.” Life restoration by electricity became a career dream.

Age 10: Bakken’s parents encouraged his career development with toys like an electric-eye kit, a

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kiss-o-meter. (laughs) I wanted to measure the intensity of kisses. You had a boy and girl each holding onto an electrode as they kissed and it measured intensity.

Cooper: Each person has cycles of energy. Some people

are “morning people” and some are “night people.”

My patterns are all related to caffeine.

Cooper: Great way to meet girls, all in the name of science. (Bakken laughs) But, I’m guessing a smart kid like you got picked on by the school bullies?

Bakken: (laughs) Mine, too. Want some coffee?

Bakken: Well, I had made an early taser, like the ones police use. Mine put out 20,000 volts. Cooper: Did you ever get to use it? Bakken: (smiles) Once or twice, and they never bothered me again. But I didn’t know what I had. Tasers are now three times as strong, using about 60,000 volts.

Cooper: (laughs) You have this love affair with electrici-

ty, but you were also interested in sound waves?

Bakken: In the ‘30s I wanted to figure out how radios

worked. I’d take them apart and then put them together

again. Though I never went on the air transmitting as an

amateur, I do have all the best radios in the world in

terms of reception. I can receive broadcasts from all

over the world.

Cooper: Do you have a radio room?

Cooper: I wouldn’t want to be on the receiving end! Bakken: (laughs) For sure. These days, I’m excited about bringing along other kids who remind me of the child I was. We have a science bus for kids that travels around. It’s called the Just-Think-Mobile. And in Earl’s Garage, another of my programs, we help children get into electronics. We also have a young inventor’s workshop. Hopefully some of the kids will eventually turn into engineers. That’s how I got started. I created Medtronic in an 800-square-foot garage and now we have many millions of square feet.

Bakken: Oh, yeah. And I have the Pavek Museum of

Broadcasting in Minneapolis, which covers the history

of radio. It covers radios from the turn of the century—

the crystal detection set. Of course, crystal radio doesn’t

require any power if you have local stations that are

strong enough. I had a crystal set built into my bed so I

could listen with the lights out after my parents thought

I was asleep. I like old-time radio like Amos ‘n’ Andy

and Fibber McGee and Molly.

Cooper: Your early inspiration came from a movie, and you’ve said your ideas now come to you in your dreams?

During the war, it became known that I had a first-class,

radio-telephone license that I had gotten when I was 17,

and they automatically made me a radar instructor. I

taught airborne, high-altitude bombing radar for three

years.

Bakken: Let me tell you a little about my dreams. They come to me momentarily after the lights go out at night and I’m in bed. My mind starts going. I like to write them down to remember them in the morning.

Cooper: But your career ultimately flew off in another

direction… (Bakken laughs) As a company president

you’ve lead thousands, but you’re actually more of an

introvert?

Cooper: In my process, I don’t want to necessarily wake up. I think that if my dream is so brilliant, I’ll remember it. Sometimes I do, sometimes I don’t. But your dreams come before you get to sleep?

Bakken: I was a typical introvert and didn’t like public

speaking, but in my business I had to do it. I didn’t like

flying, but I had to do it. Some things you do, even if it

isn’t your nature.

Bakken: Yes, and that’s the only way I can drift off, by getting them out.

Cooper: Do you have any secrets that get you through

public speaking?

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him with a hands-on appreciation of electronics, chemistry, biology, physics and engineering. Built a radio from a crystal set to have in his bedroom, so when his parents said “lights out” he would be able to use it in the dark. chemistry set, a microscope, several Erector Sets, electric trains, and Lincoln Logs. They provided

Age 12: Built a five-foot tall robot that blinked its eyes, brandished a knife, talked (via a remote-controlled speaker), and puffed on

hand-rolled cigarettes! Its lungs were contructed out of a used a hot-water bottle, which the tobacco smoke rotted out from the inside. This furnished Bakken with another important life-lesson—Stay away from cigarettes.

Age 13: His minister told him “use science to benefit humankind, not for destructive purposes.” This has become a deep, spiritual calling.

Made model train from erector set. Collected trains throughout life.

Age 16: Built a Kiss-O-Meter, which measured the emotional connection between the kiss of a boy and a girl.

Age 15: Dreamed of a radio reception room and built one.

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Bakken: I have something that gets their attention at the beginning. It depends on the speech, but it has to be something that goes along with the aloha feeling of getting the people close to you. Cooper: You make an emotional connection right off? Bakken: You want them to be listening to you, and then you have all the rules: You want to “tell ‘em what you’re gonna tell ‘em, tell ‘em, and then tell ‘em what you told ‘em.” Cooper: A number of your newer ideas regarding health seem to be inspired by your surroundings. Bakken: It all comes back to Hawaii. There are seven organizations here in Hawaii that I’m very involved with, all attending to the health of the people. I have a community-health organization called Five Mountains Hawaii that targets a lot of local issues, such as drug and alcohol abuse. We’ve also begun to measure community health in every way you can think of, including automobile accidents. Cooper: What are some of your findings? Bakken: Well, for instance, we have a report that says students that don’t finish high school experience an extremely high death-rate in future years. If they do finish high school, those rates drop a little. If they get a year of college or trade school, those rates drop by half. And that’s U.S. figures, not just the Big Island. We try hard to encourage parents to be sure their children get at least 13 years of schooling. Somehow it awakens the child’s brain to look at life more positively. Cooper: How are you trying to change these statistics locally? Bakken: We have a lot of activities for kids. Altogether I have about seven programs, including Earl’s Garage, which introduces kids to basic electronics and mechanics. We have classes at an astronomy center in Hilo, and we teach the Hawaiian language, starting with children three and four years old. Years back some Americans tried to wipe out that language, now we’re reviving it.

We also have a canoe project. Makalii is a two-hulled canoe that’s built in the same way the original ones were built for the Hawaiians who arrived in 700 A.D. They learned to sail the Pacific by navigating by the stars, by the wave and bird formations, and by their own intuition. We take 20 kids out on 10-day trips similar to an Outward Bound experience. They have no cabins or toilets, and they have to prepare their own food. Cooper: So you’re bringing them back to the days before videogames and cell phones? Bakken: Exactly. They have nothing to guide them other than the stars. Of course, they have a radio if they get in real trouble. But generally they find their way as they learn about how their ancestors first arrived on these shores in much the same manner. It can be a very rough trip, especially if they run into a storm. They come back from this adventure very changed. Cooper: Why did you choose Hawaii, and specifically the Big Island? Bakken: As I was nearing retirement from Medtronic, my wife and I decided to move to a place that was warmer than Minnesota. We began looking at islands around the world: the Mediterranean and the Caribbean, the Canary Islands, the South Seas and Tahiti. My wife’s father was a postmaster in Hague, North Dakota, and as a child she’d seen postcards of the Hawaiian Islands. I think those early images nudged us in this direction. When we finally got to Hawaii we began to look at which of the Islands we liked the best. We fell in love with the Big Island and built our home about 10 miles north of Kona Village, where there were no telephones, no TVs—nothing to disturb the silence and beauty. Later, we ended up getting computers and telephones. The latter is by a microwave link up the mountain. We generate our own electricity, make our own water, have our own sewer. Cooper: So you’re “off the grid.” Bakken: (laughs) We make our own grid! We have three generators and they’re really running well. As long as

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Dreamed of the “Mousenik for chronobiology study with Franz Halberg.

Florida. This led to several self discoveries, one being that he liked to teach, and another, that he wanted to live in a warm, sunny climate someday.

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Age 24: Twinco, Bakken’s first company, began phono-record manufacturing and production with a local “artist” known as Slim Jim, the Vagabond Kid, who sang Norwegian folk songs on local radio. One Bakelilte recording was made.

Age 25: On April 29, Bakken and Palmer Hermundslie form a partnership to service medical electronic equipment. The company is called “Medtronic.” First month’s income is eight dollars.

C. Walton Lillihei at the University of Minnesota Hospital begins operating on “blue babies.” The procedure sometimes results in iatrogenic heart block. Age 33: On October 31, a blackout occurs in the Twin Cities. Lifethreatening problems result which

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we can get propane to run the generators, we do fine. Of course, we’re actively seeking alternative-energy sources to reduce our dependency on Mid-East oil, at least for our island. Cooper: What results has your alternative-energy research yielded? Bakken: We’re looking at biodiesel—plants that produce fuel—and all the ways we can convert wind, solar and other power sources. We’re exploring the potential in methyl hydride—ice that’s got methane gas trapped in it. There are massive quantities of it in oceans around the world and it can be mined fairly easily, but it’s still a fossil fuel, so it’ll produce carbon dioxide. We’re also looking at soybeans as a fuel source and a new and improved system of converting solar energy.

That’s one of the advantages we have as an island. We’re smaller and more self-contained, and we can really push hard to get it off oil. We have two big wind farms generating energy already. It’s harder to move as quickly on the mainland. Cooper: You have helped create a hospital far different from what most people have ever encountered. Bakken: North Hawaii Community Hospital is very different than any other hospital in the world. It has 63 things that make it different…. Cooper: I really think you have to find one more. Sixtyfour is a nice, even number. Bakken: (laughs) I’ll think of one more. The hospital is broken up into things that affect the body, mind, spirit,

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cause the death of one of the “blue babies.” Lillihei contacts Bakken the next day to see if Medtronic can solve the problem. One month later, Medtronic delivers to Lillihei the first wearable, battery-powered, transistorized cardiac pacemaker.

Age 35: Dr. Samuel Hunter of St. Joseph’s Hospital in porposes that the Medtronic pacemaker might be effective for managing StokesAdams patients; a Medtronic device fitted with a Hunter-Roth electrode is implanted in a 72year-old patient that spring. Medtronic becomes a global operation. Gross sales are $181,000 for the fiscal year 1959-1960.

Greatbatch for Medtronic to manufacture and market the ChardackGreatbatch implantable pacemaker.

Bakken composes Medtronic Mission Statement. Palmer Hermundslie flies to Buffalo, N.Y. to sign a licensing agreement with Dr. William Chardack and Wilson

Began the Mission Medallion program for all new employees of Medtronic. A bronze medallion bearing the words “toward full life” is given out with a mandate for each employee to fulfill the company’s mission. ABILITY 51

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nature, and community—it’s what we call “blended medicine.” It has three major components: high tech, high touch and environment. In terms of high tech, we have all the latest equipment including MRI, CAT scanner and we’re currently digitizing our patient records. We combine that with hightouch: loving and caring for our patients, knowing them by name and not just by their disease, and we include complementary healing modalities, such as: qi qong, chiropractic care, massage and acupuncture, each tailored to the person. Finally, it’s important to have a healing environment, including elements such as skylights. Because of chronobiology—the rhythms of the body—we need to synchronize with the sun every day to be normal. We also have windows in our operating rooms to keep people synchronized and every room opens to the outside. Have you ever seen that in a hospital? In most, environment is so often forgotten. Cooper: Did you consider aesthetics, such as colors and patterns? Bakken: Everything, including the mounting of the art, is done according to feng shui rules of the Far East. We have tea plants in the corners of all the buildings to keep bad energy from entering the hospital. We also have bamboo forests outside and some bamboo in the chapel. Rather than being one room in the hospital as is so often the case, our chapel is out on an expansion by itself. It has beautiful colored windows and is oriented so that it points directly to the Kohala Mountains and Mauna Kea, because of the gods that Hawaiians worship on those mountains. Cooper: It didn’t feel like a hospital. Bakken: You don’t smell it. All the doors let in the mountain air. Everything about the hospital is different in order to make it more patient friendly. Cooper: What’s the ratio of nurse to patient? Bakken: About six patients per nurse. Yet many facilities out there have 10 and 12 patients to one nurse, but a

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The Hawaiians believe very much in lokihei as a healing way of living. Lokihei means balance, not going extreme in any direction. We have a mural in the hallway, showing the complementary doctor on this side and the scientific doctor on the other side, but more often we find the same person on both sides. You can see they’re in the canoe, heading for a brighter horizon, under the guidance of the star Lakali’I. This is the mission that we’re here for, “patient-centered care.” Our goal is to become the most healing hospital in the world. Cooper: Have you ever thought of using this as a model to bring in hospital administrators, to let them see your facility with its high-tech, high-touch and environmental components? Bakken: We have people from all over the world coming here to see what we’re doing. Cooper: You’ve created a hospital that is a sanctuary for healing. Bakken: One of the most important components is our Ohana Room. “Ohana” means “family.” If families want to get out of the patient’s room for a while, they can go there and lie down on the couches. There’s also a full kitchen, where the family can have a meal together there, as they do at home. It has a piano that a family member can play, because music is extremely important to the health of Hawaiian people. Cooper: To everyone. Bakken: To anyone… I try to convince everybody their job is to help heal patients, which makes a difference in the way people do their work. Even the housekeepers clean meticulously because that is their role in helping to heal patients. The housekeepers come around in the morning with hot towels. They’ll offer them to the doctors and nurses who’ve been on call all night to wipe their face and hands before they go off duty at seven o’clock. After you’ve been up all night, it’s good to wipe your face and feel the refreshment of peppermint or lavender aro-

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The new St. Anthony’s Medtronic facility opens. Medtronic’s proprietary line consists of 13 devices. Sales for the fiscal year ending in April 1962 go over the $500,000. Became “hooked” on ballroom dancing after taking lessons for the Medtronic holiday dinner and dance.

nurse can’t adequately care that many people at once.

1974 Formed the Bakken Museum and Library, which displays the history of electricity from the year 1200 A.D. to present. Including the Victor Frankenstein Lab

Age 53: Medtronic listed on the New York Stock Exchange.

Dreamed of a boat on the Mississippi River, The “R Wave.”

Established The Bakken Society.

Age 58: Bakken marries Doris Marshal on October 21 on the Big Island of Hawaii.

1980 Bakken receives the Outstanding Achievement Award from the University of Minnesota (its highest alumni award).

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Earl Bakken and Jerry Lewis at Medtronic Headquarters

matherapy. A simple little thing, but it makes a big difference in people’s lives that someone cares enough to bring a hot towel. Even the cooks. They’re not just cooking, they’re creating healing nourishment for the patients. If someone comes in who’s had an argument at home, the head chef won’t let them cook.

don’t even know if you want to call it a hospital. It seems like you should find another word. Bakken: We’d like another word, but we have to fit into the model. Cooper: In regard to the Bakken Heart-Brain Institute and the research you’ve lead, which areas stand out most to you?

Cooper: The negative energy. Bakken: Yes. We pass out medallions to every employee. It’s got our mission statement on the back in Hawaiian. It says, “We paddle the canoe together, paddle and bail, bail and paddle. Together we reach the distant shore.” Cooper: You need to push the concept of this hospital. I

Bakken: We’re doing many studies, but the body is so complex that we don’t begin to claim we understand everything. So much of what we do in traditional medicine has never really been tested either, and we’ve never found out exactly how things work. We just do it because doctors have always done it, and they continue to teach the same methods over and over in medical schools. And then they turn around

1 9 8 4 Helped establish the Continuum Project, a study of consciousness. Age 60: Received the Centennial Medal, Institute of Electrical and Electronics Engineers. Received the “Engineering for Gold” Award. National Society of Professional Engineers, honored cardiac pacemaker as one of the ten most outstanding engineering achievements in the last 50 years.

1 9 8 8 Lyla Koch received Medtronic pacemaker at one month, Earl visits the happy 5 year-old.

Bakken receives the Institute of Electrical and Electronics Engineers (IEEE) Centennial Medal. Age 61: Medtronic first appears on the Fortune 500 list. Bakken receives NASPE’s Distinguished Service Award. Bakken helped form The Pavek Museum of Broadcasting.

Began dreaming of alternative energy hydrogen, fuel cell, bio-diesel. 1988 Recieves Governor’s Award for Medical Leadership, Minnesota Medical Alley Association. Medtronic’s fortieth anniversary. Medtronic sales reach $750,000,000. There are now 6,300 employees in 80 countries. ABILITY 53

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and complain that complementary medicine’s never been tested. Cooper: Not many know complementary medicine. Bakken: There are more than you think. The University of Minnesota has a medical school and the dean is very holistic. In their senior year 12 students are sent down here to go through complementary healing methods and to try yoga and healing touch. They go back and tell the dean this was the best three weeks of their medical career. If people get enough of this type of training, they will learn to treat their patients as human beings rather than just as bodies gone bad. One student later told me that he went into medical school because he wanted to help people, and while in medical school he lost that focus. Everything was directed at medicine and diagnosing. Our program changed his whole perception of what medical school should be like. I think it creates more empathy in the new doctors. Cooper: But it’s such a limited number students. I think there’s a huge need in the world to have more environments like this. Does it cost more to be treated in your hospital, compared to other facilities?

weekly and a few of the diabetics were actually able to come off of their insulin. A lot of them lost a lot of weight. One man had a cholesterol of 325 and three weeks later he had it down to about 130. Cooper: Three weeks? Bakken: In three weeks, just by eating right and exercising consistently. Cooper: As we’re talking about diabetes, it reminded me, I brought you some cookies. This product is called 50/50 because 50 percent of the proceeds goes to diabetic research. The cookies are made with NutraSweet. I hope I didn’t eat them all… Bakken: (laughs) Thanks. Cooper: Do you personally use Medtronic products? Bakken: In terms of our products, I use a pacemaker and an insulin pump. And I have stints in my heart. I’ll be putting on a sensor shortly that senses my blood sugar every five minutes and telemeters that information back to the pump. Cooper: A pseudo-pancreas…

Bakken: It’s essentially no different; it can’t be. The systems no longer pay what it costs to do health care procedures. We have to supplement by seeking grants and gifts. We depend a lot on philanthropy to cover the costs, but we’re doing it.

Bakken: It’s what the pump and pancreas do together that’s so marvelous. With my pump, I practically have an external pancreas. If you don’t get your rate down to a reasonable range, you start having organ failure or vision problems.

Cooper: You have diabetes and you’re managing your own health care… and now you’re making a movie about people who are learning to manage theirs?

We have thousands of people here on the Big Island

who let it get out of control, and they’ve had to have

their feet amputated, or they’re blind. And that’s non-

sense. Even kids can wear this. I had two girls come

into my office one day, ages 10 and 13. They were on

pumps and they said, “You know, Mr. Bakken, the

greatest thing about pumps is that we can sleep over.”

That’s a big thing with girls, to sleep over at a friend’s

house and talk all night. They couldn’t do it before,

when they had to inject, or their parents were injecting

them. With the pumps, it does it all automatically.

Bakken: Some people just blast their bodies in every negative way they know how – smoking, eating the wrong foods, abusing alcohol. Our movie is the reverse of Supersize Me. We did a live-well program and took 25 patients who were not in good shape and put them into a program where they eat better and exercise, and we weave in elements of Hawaiian culture into it. Many of the first 25 people were diabetic with high blood pressure and high cholesterol. They were monitored

Cooper: This is the perfect example of the lack of certain

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Bakken participates in an expedition to Baja California to record the electrocardiogram of the California Gray whale.

Began involvement with the creation of North Hawaii Community Hospital. Coined the term “Blended Medicine.”

Age 65: Moved to a dreamed-of destination at Kiholo Bay

Dreamed of a seismograph to detect earthquakes. Age 66: Medtronic sales reach $1 billion. Bakken becomes Honorary Fellow, American College of Cardiology.

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Receives the Lifetime Achievement Award, Entrepreneur of the Year Institute.

Age 67: Publication of 2010: On the Current Crisis in Health Care and Its Implications for the Hospital of the Future. Age 70: Bakken retires as a member of the Medtronic Board of Directors. Dreamed of a medical history museum, the Paniolo House, two volumes of oral histories now in print.

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socialization that goes hand in hand with certain disabilities: Two girls who can’t spend the night at each other’s homes because of treatment obstacles. So with the pump, you’re helping them to preserve their childhood. Is the data from the pump relayed to your health care provider? Bakken: When we were on clinical trials, we broadcast it over the Internet. It’s all digital. If the blood sugar gets too high or too low, it’ll beep or vibrate, and you’ll know something is wrong. Cooper: It’s sending out a signal saying, “Please do something.” Bakken: That’s right. Cooper: Do you feel as though you have instilled similar person-first emphasis within Medtronic as you have at the hospital? Bakken: Medtronic puts lots of money into charities, such as Second Harvest, which combats hunger, and into helping people in health programs. We had one sales meeting recently in Phoenix, and the man running it said, “We’re going to have a contest for you salespeople to see who’s the fastest.” He had bicycle parts in cartons. He had about a hundred sales persons there, and he broke them into teams of two to test which team could get the bicycles assembled correctly and quickly. Everyone thought it was a real contest. They all went to work and assembled bicycles. When they were done, the doors of the room opened and a hundred kids came in. Each was directed to a team that had his or her bicycle. There wasn’t a dry eye in the crowd. The first mission, and the main one, is helping people. Cooper: Anyone mention to you that you’re not a typical engineer? Engineers are usually described as “thinkers,” and yet you have this massive “feeling” side. Bakken: Well—so much of medicine is treating the body, and I want them to treat the whole person. I want doctors to think about this heart-brain medicine. I’ve been dreaming about it for 30 years.

Earl and Doris Bakken

For the patient, it’s a way of getting the body back in one piece, because so many doctors are trained organ by organ, and we don’t have organs. They don’t exist. It’s parts of the body, and the whole body works together. When the heart beats, it affects the whole body. Cooper: As we get better at understanding what health is, we’re all living longer. I think what we once believed to be high standards just a generation ago have been outdistanced. Bakken: One of my granddaughters wants to go to medical school and be a pediatrician. She just graduated with a degree in marine biology from the School of the Atlantic in Maine. In a senior paper she wrote on alternative medicine she said it was her grandfather’s work that got her started on this path. Her conclusion is, after doing a heavy study on ‘alternative’ medicine, we should drop the adjective…. Cooper: …and just call it ‘medicine.’ Bakken: Exactly. www.earlbakken.com www.thebakken.org

2 0 0 0

The January 12 1996 issue of Fortune Magazine names Medtronic one of “the 100 best companies to work for in America.” Bakken helps support Big Island solar energy and a solar car-building program in the local public schools.

Bakken publishes his autobiography: One Man’s Full Life

2006 Medtronic’s sales reach $11 Billion with 36,000 employees

Medtronic celebrates its fiftieth anniversary. 20,000 Medtronic employees serving customers and patients in over 120 countries, and sales of $4 billion.

Chet Cooper dreams of meeting Earl Bakken

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ouston Cowan sat in his plush, Chicago high-rise office reading a ski magazine. As a successful contractor, he was literally doubling his money every single day. In the business realm, he found that money answered most questions. But that afternoon, reading the ski article, he came across a conundrum that really got him going. So he picked up his phone and dialed information, looking for the man featured in the ski story. Finally he found him: “Hello?” “Hello. I’m Houston Cowan, and I’m calling you from the thirty-eighth floor of a building in Chicago,” he said, and then added, “I want to know how in the world do you ski blind?” The gentleman, who Cowan now identifies only as Peter, responded with an inquiry of his own. “Describe your office.” Cowan did. Then Peter said, “Close your eyes, stand up, turn left, go right, go right, stop.” When Cowan opened his eyes, he was standing in front of the couch across the room. “That’s how I ski,” Peter explained. “At that point my life changed,” Cowan said, noting that his idea of becoming rich has transformed from financially wealthy to helping others. “I said, you know what? If I’m going to put all this energy into making money, I’m going to liquidate my company and move to Aspen and learn how to teach blind people to ski.” CUT TO ASPEN, COLORADO, A FEW YEARS LATER Cowan, who had no disability, nor family members with one, moved from Chicago to Colorado and began teaching people how to ski. In 1994, through a non-profit organization he created called Challenge Aspen, he began to provide recreational, cultural, competitive and educational programs year-round for anyone with physical or mental disabilities. The focus is on skiing, as Challenge Aspen delivers more than 6,000 lessons during winter months alone. Recently, a thousand of those lessons went to injured veterans during the 21st National Disabled Veterans Winter Sports Clinic held in Snowmass Village, Colorado April 1-6. “Skiing really creates a bridge to a fuller and happier life,” said Sandy Trombetta, who founded the Winter Sports Clinic and depends on Cowan’s organization to help with ski instruction. “When people get up on that mountain, it’s a really spiritual feeling you have there. So it has a real impact on how they think about themselves, their place in the world and what they can do, not what they can’t do.”

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Cowan agrees. “The Winter Sports Clinic is called ‘Miracles on a Mountainside,’ and that’s exactly what happens here,” said Cowan, who completed his seventh year of coordinating ski lessons for the clinic. This year 456 veterans—at least 100 of them newly injured in Afghanistan and Iraq—ascended Colorado’s snow-capped peaks to take part in the activities provided at the Winter Sports Clinic. Aside from adaptive skiing and snowmobiling, fencing, curling, golf and rock climbing were popular sports as well. But the main draw each year remains the slopes. FROM THE TOP OF THE MOUNTAIN “I’ll admit it, I’m an adrenaline junkie,” said Chris Devlin-Young as he rode the ski lift to the top of one of the peaks. Devlin-Young, a three-time Paralympian and four-time medalist in men’s Super-G and Slalom, was introduced to skiing at the 1987 Winter Sports Clinic. Now he returns each year, in between training for competitive races, to serve as an instructor. “A lot of other people are getting out with their families and having fun. And every single one of them has that adrenaline because of the control that they’re able to put into skiing with today’s technology. “For me it’s an avenue into which I’ve been able to focus my energy,” he said. “What it really does is it helps me to forget. I’m able to get on the mountain and for a few moments I don’t even feel disabled. I’m reminded every day when I have to get back into the wheelchair and move around. Sometimes at the bottom of the mountain it’s muddy or snowy and really difficult to get around, but when I’m up here on the mountain there’s nothing I can’t do.” A Coast Guard vet, Devlin-Young was injured in a 1982 plane crash in Alaska. He suffered irreversible spinal trauma while attempting to save his crewmen from the wreckage. Years later, he discovered his love for skiing when a therapist invited him to the Winter Sports Clinic, and for the last 14 years, he’s been a member of the U.S. Disabled Ski Team and an instructor, who also works to improve adaptive skiing and snowboarding technology. Recently, Devlin-Young faced a crowd of eager veterans –his newest students—who awaited instruction before taking on the mountain. It was a proud moment, because when he’d met them days earlier they weren’t nearly as confident. Bradley Barton, national commander for Disabled American Veterans, a sponsor of the clinic, agrees.

said. While Devlin-Young adds that many vets progress quickly, “From one run to the next, some go from an intermediate skier to an advanced skier with the skill level and the confidence they get. It can literally happen in one run as the light bulb goes off in their head.” FLIPPING THE SWITCH “I don’t like sitting around saying I can’t do this or that because of my injury. I like being able to say I can do it in spite of this injury,” said Brian Beem, an active-duty staff sergeant in the Army. Beem lost his right leg below the knee from a makeshift bomb in Baghdad last October. Six months later, while rehabilitating at Walter Reed Army Medical Center, he signed up for a Winter Sports Clinic at Vail, Colorado, for what turned out to be an early training session. In Vail, he tried unsuccessfully to ski standing up for the first time. Then he tried to sit-ski, which had the added benefit of allowing the developing sores on his right leg to heal. But he wasn’t satisfied. “It was extremely frustrating, but I wanted to get the most out of the event that I could,” Beem said. “Failure is the best way to actually force yourself to learn, because you want to try harder the next time.” The second day, everything his instructors told him was engraved in his head. By the time he got to the Winter Sports Clinic, he practically had his skis on. “I was so ready to do it, there was no apprehension at all,” Beem said. “I wanted to get up there so badly. Now there’s nothing that I’m not willing to try.” Even before his injury, Beem had wanted to ski, and now plans to build on his experience. “We call it a clinic for exactly that reason, because it’s a learning atmosphere,” Trombetta said. “What we do is bring disabled veterans in and provide different types of activities that really help them in their rehabilitation and physical activity level. We let them see all the different options they have available to them, because the hope is that once they leave here and go home, they’ll continue to stay active and lead a healthy life.”

“We had opening night on Saturday and I looked out into the crowd and saw a lot of the new participants hanging their heads, looking bewildered and feeling intimidated,” said Barton.

MORE THAN SKIS AND POLES “When I first started this, we had one veteran and I took him skiing,” said Trombetta, who worked as a recreational therapist in the mid 1980s. “It took five of us to hold him up. He’d ski about a foot and fall down, ski about a foot and fall down. I became concerned that he was going to injure himself, and I said to him, maybe we should stop doing this because you’re going to get hurt. And he just looked at me and said, “You know what, I don’t care. I can really do this.”

BUT A NEW OUTLOOK CAN BE ACHIEVED IN MINUTES “After they’ve skied or been scuba diving or climbed the rock wall, it’s just a whole different attitude,” Barton

“It dawned on me at that moment that he was someone who was dealing with a loss and he was finding himself again through this activity.” ABILITY 57

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The Winter Sports Clinic is more than just skiing. It’s healing. It’s recovery. It’s mental stability. It’s what Trombetta calls “guided discovery,” when an individual learns things about himself without being taught. “It’s not just about skiing and seeing what they can do, but it’s about meeting other folks and seeing how other folks have dealt with similar disabilities. It’s also about making new friends and seeing the love and support the American public shows disabled veterans,” Barton said. “Due to the conflicts and disagreements over foreign policy, I think veterans sometimes feel like they’re alone. And I think what this event does is it lets them know that they’re not alone.” Trombetta said the techniques and skills taught at the Winter Sports Clinic are much like those taught within the four walls of a normal rehabilitation clinic. But because the activities take place outdoors in a different environment, individuals often forget they’re participating in rehab or being treated for injuries. A large part of that is due to the variety of lessons that are available during the week-long clinic. Days start at 6:30 a.m. with a breakfast and include as many as 15 activity options scheduled all the way up to midnight. Musical entertainment and social events cap off the evening. “It’s everything from scuba diving to archery to fencing,” said Cowan, who estimated he had about 150 ski instructors deployed for the clinic. “But we do over 1,000 lessons in five days at this clinic. That’s more than 50 percent of what the adaptive programs in the country do in the whole ski season.” “There’s nowhere in the world that will have more diverse adaptive lessons than this clinic. With the wide range of injuries we work with here, you truly have to have the best instructors to work with these men and women who come here.” For a Paralympian like Devlin-Young and many other racers who attend the clinic each year, it’s more than an opportunity to hone their skills on the mountain. Many use the clinic to teach others what someone once taught them. FOR NEW SKIERS LIKE BEEM, IT’S MORE. “To the new guys, they’re dealing with so many different issues and ability levels,” Trombetta said. “They really have different bodies that they’re first trying to cope with. They’re not sure what’s ahead, what they can do. It’s all so new to them. When we get them as quick as we possibly can post-injury, and get them involved in activities like this, they start to realize ‘This is going to be a full life for me. I can participate in as much as I want. There are going to be a lot of activities available for me out there’.”

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“Skiing is probably the greatest adaptive sport to learn and participate in. You’re right alongside the able-bodied population doing the same exact thing, dealing with the same exact issues—and that’s getting that ski to turn.” Beem described his adjustment to the snow: “A lot of it is just a natural feeling, like you want to pull in one direction or lean into it. I might have trouble tilting my amputated leg, but they have adaptive equipment that helps me with that.” CONQUERING MORE MOUNTAINS As winter melts into the summer months, opportunities to stand atop a sunny, snow-covered mountain become rare. But those skiing skills and turning techniques won’t go to waste. For the veterans learning to ski, those skills help instill an attitude that prepares them for a new life ahead. “It teaches them that, despite the loss they had before the injury, they have a whole new life ahead of them,” Barton said. “Life didn’t end when they lost their leg or became paralyzed or lost their vision.” For Trombetta, the clinic he started 21 years ago with one skier and five instructors continues to teach, long after the snow melts. “We use skiing as a bridge,” Trombetta said. “There may be a guy who’s going slow in his daily life, whether he’s using a wheelchair or canes or is visually impaired. Then you get them on these darn skis that work tremendously, and they’re going fast again. They’re making these quick moves and it just turns them on big-time. And that opens up a whole new mindset of ‘Wow, man, if I can do this there’s so much more I can do.’ That’s what we’re after.” “It’s a profound change. The first time they see the mountain, they’re like ‘Man, oh man, how am I going to come down from that’?” After 20 minutes, they’re doing it. Once they come down, they’re totally changed.” For Cowan, an Aspen transplant from Chicago who helps teach the vets to ski, the ability to help them continue with a new outlook is much more fulfilling than increasing his bank account ever was. “Considering the wealth I was after monetarily, I’ve become a billionaire in what I’m doing now, but not from money,” he said. “I almost hate to say that because I feel selfish because I get so much more out of it than what we give as an organization.” www.challengeaspen.com www.miracles.dav.org www.dav.org

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THE FAMILY THAT SKIS TOGETHER…

s Sandy Trombetta stood talking to one of the veterans at the National Disabled Winter Sports Clinic, he realized that he’d seen him before. In fact, he’d taught the veteran to ski at a previous clinic years ago. That’s when the vet, who had a brain injury from his military service, introduced Trombetta to his wife who was also at the April clinic in Snowmass Village, Colorado. “Guess where I met her?” the young man asked Trombetta who finally gave up guessing. “I met her skiing.” “That’s the kind of stuff that knocks you over,” Trombetta said. “It’s really cool, because we’ve shown that these things are possible. Just because people suffered these injuries doesn’t mean that life stopped.” For twenty-one years the Winter Sports Clinic has provided an array of winter activities. For the nearly 500 injured veterans who traveled to Colorado for the weeklong stay, it is more than just skiing down a mountainside or rock climbing that these men and women, returning from war, have an opportunity to learn. They also pick up skills that, in some cases, change their lives. Morale, a common casualty for injured veterans, can hit rock-bottom as they rehabilitate. But rehabilitation mixed with a sporting activity can often boost the ego, especially when a family member joins the fun. “It’s probably the most important thing for me,” Army staff sergeant Brian Beem said about having his wife Elizabeth with him at the clinic. Beem, who lost his right leg below the knee from a makeshift bomb in Baghdad last October, skied for just the second time in his life while at the Winter Sports Clinic. The learning curve, he found out, was quite steep. But, the whole time his wife was there too, taking lessons. That’s healthy for the veteran, according to Disabled American Veterans national commander Bradley Barton. “We encourage the participants to bring their wives or their mothers or whoever is helping them get through their treatment to come to the clinic, so they can also see that, just because of the injury, life isn’t over,” he said. “With the current conflict going on, we have more and more soldiers who are already married and they have families. Their families need to help them adjust to their disability, and we need to help both the veteran and their families adjust to their disability. And I think that’s what this clinic does—it gives them an opportunity to see what the possibilities are.” Those possibilities seem magnified at the Winter Sports Clinic which offers more than a dozen activities from

sun up until sun down. Different levels of participation allow advanced veterans to both interact with and instruct newly injured veterans. Many are learning to do things for the first time after their injury. Beem learned to ski during his initial trip to the clinic. Chris DevlinYoung, however, was back for the twentieth time, he’s a Paralympian skier who returns to the clinic each year as an instructor. “Through skiing, personally I have found I prefer to be alive and have all my senses active than to be numb,” said Devlin-Young, a Coast Guard veteran who was injured in a 1982 plane crash in Alaska. “And it takes a little selfrealization. For me, it was skiing that changed my mind. I tried self-medicating, before I learned how to ski, for a couple of years, and I was on a downward spiral.” That’s when Devlin-Young discovered skiing. It’s at that moment when a veteran’s attitude can be the most vulnerable, and participation in the clinic has proven to strengthen not only ego and morale, but family ties as well. “I do think the number one thing is the family,” said Houston Cowan, founder of Challenge Aspen, the organization that provides ski instructors for the Winter Sports Clinic. “The vet has a disability. But a wife or husband, son or daughter, who has a family member come back disabled, many times that’s the toughest fear to overcome. What’s going to happen to our family dynamic? Can I play baseball or basketball with my son or daughter anymore? I think this clinic shows that you might be swinging from a chair or with a prosthetic, but you’re still going to be able to do everything you did before, and sometimes more.” Trombetta said the clinic simply helps to answer questions a veteran may have about life at home. He admitted neither he nor the instructors are the ones who provide those answers. They come from within the veteran. “What happens is that because the skiing opens up the perceptions of what people can do, they’re more open to try some things,” Trombetta said. “And even if it’s not what they’ve learned here, they’re going to be more apt to look into what’s available once they get home and become more involved. It’s a huge thing in the person’s own development because what happens is they say, ‘You know what? I can get a job, I can volunteer, I can go to school, I can raise a family’.” “The guy who told me he met his wife while he was skiing, he couldn’t have done more for me. It’s the same thing when they tell me they’ve gone home and they’re volunteering or they’re helping with children or going back to school. Then I know it wasn’t just skiing.” www.chrisdevlin-young.com

by Josh Pate

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DIETARY CHOICES PLAY AN IMPORTANT ROLE IN REDUCING CANCER RISK

Tired of Cooking? Try a Raw Diet

sugars and flours and is rich in anti-oxidants that fight cancer-causing free radicals.

So, if you’re ready to sample the raw-food buffet, here’s a sample menu. On this diet, feel free to eat all the fresh fruits and vegetables you desire, and go for organic whenever possible.

he host and co-producer of radio’s Alive & Well with Michelle Harris, is passionate about getting us all on the path to healthy living. Her AmericanLife TV Network show features such segments as celebrity health and beauty, herbal remedies and diet tips. One particularly popular trend, Harris finds, is the rawfoods diet. “It takes off weight amazingly fast,” she says, “and keeps skin glowing.” She finds that the fiber in raw fruits and veggies fill you up so you don’t need to eat as much, and she adds that, “Raw produce also offers a nutritional pick-me-up with enzymes beneficial to digesting your food.” She even champions the great protein found in raw nuts and seeds, where you get essential fatty acids that your body needs. Still, Harris finds that most 100-percent, raw-food diets can be too time intensive for most people. With her 60percent raw diet, you can reap many of the benefits of the full-on version, while maintaining your hectic schedule. The diet also cuts back on bad-for-you refined

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BREAKFAST (Choose one daily) Berry Smoothie 1 cup almond or soy milk 1 scoop vanilla-enriched soy or vegetable-protein powder 1 frozen banana _ cup of unsweetened frozen strawberries or blueberries Blend together Orange dream Smoothie _ c vanilla almond or soy milk _ cup orange juice _ c unsweetened frozen peaches. 1 frozen banana

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Blend together Granola with fresh fruit _ c granola topped with almond or soy milk 1 cup of fresh berries or fruit of your choice. English Muffin 1 sprouted grain English muffin topped with 1T peanut butter or almond butter. 1 cup fresh fruit Fruit and Yogurt 1 cup soy yogurt 1 cup fresh fruit 1 T flax seeds LUNCH (choose one daily) Avocado Salad 1 cup fresh spinach _ ripe avocado (cut into strips) Thinly sliced red onion Sections of one orange or two tangerines Two pieces of cooked veggie bacon crumbled into bits 1 T sliced almonds Top with low-calorie vinaigrette of your choice Serve with 3 pieces of veggie turkey Or Refreshing Gazpacho (makes 4 to 6 servings) 4 medium tomatoes, chopped fine 1 small green pepper, chopped fine 1 small yellow pepper, chopped fine _ cucumbers, chopped fine _ red onion, chopped fine 1 clove of garlic, minced 2 t oregano 1 T fresh parsley, chopped fine for garnish 1/1/2 t dry mustard Dash of hot sauce like Tabasco (more if you like it hotter) 1 T olive oil 2 T red wine vinegar 24 oz of tomato vegetable juice Combine all ingredients and refrigerate overnight.

Serve with a soy turkey-club sandwich: two pieces of sprouted grain or whole wheat bread 1T veggie mayonnaise veggie bacon lettuce tomato Taco Salad 1 cup shredded romaine Carrots, shredded Red pepper, chopped Jicama, chopped _ cup meatless chili (such as Boca Meatless Chili) or black beans with chili seasoning 3 T shredded soy or almond cheese _ fresh avocado 4 flaxseed tortilla chips (such as Trader Joe’s brand) Dressing 1 t olive oil 2 T lime juice Pinch of chili powder Combine ingredients for dressing and whisk. Mix together veggies and toss with dressing. Top with chili, soy cheese and avocado. Garnish with flaxseed tortilla chips. Perfect Pita 1 whole-wheat pita pocket Romaine lettuce, shredded Carrot, shredded Bean sprouts Fresh broccoli, chopped Cauliflower, chopped Fresh zucchini, chopped 3 veggie chicken or turkey slices 2 t vinaigrette dressing 1 t sunflower seeds _ avocado, chopped Add ingredients to pita and drizzle dressing over it. Serve all lunches with a piece of fresh fruit and a glass of enriched soy milk.

—Banana ice cream (Peel, slice and freeze ripe bananas, put through juicer, food processor or blender and add a favorite flavor, such us unsweetened coco. Blend to make a wonderful, sugar-free “ice cream” dessert. You can also add frozen fruit such as strawberries or blueberries to make a fruit flavored dessert.) DINNER Veggie Chicken Parmesan One veggie chicken cutlet One slice soy cheese _ cup spaghetti sauce Heat veggie cutlet, top with warm spaghetti sauce and cheese Serve with Zucchini Slaw 1 zucchini, cut into matchstick-sized pieces. 2 T pine nuts 3 sun-dried tomatoes, sliced 2 T vinaigrette Combine and toss Veggie Salisbury Steak One “beef style” veggie burger, such as a Boca Burger or Morningstar Farms Sliced onion 2 T vegetarian brown gravy Grill onion and heat the burger. Top burger with the grilled onion and gravy. Serve with: Apple and Jicama Salad (Makes 2 servings) One crisp apple, thinly sliced 1 cup jicama, thinly sliced _ cup red and yellow peppers, thinly sliced _ cup red onion, thinly sliced 1 T currants Dressing 1 T olive oil 3 T apple cider vinegar 2 t agave nectar (for sweetness)

SNACKS —5 Flax crackers _ cup hummus —1 apple with 2 T unsweetened, non-hydrogenated peanut butter

Combine all fruits and vegetables. Wisk together olive oil, vinegar and agave nectar. Add to salad, toss and serve. continued on page 73 ABILITY 61

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ACROSS 1. Celebrity battling Parkinson’s Disease 3. Last day of the work week 7. Eggs 10. Games for those with guts 15. Environmentalist, Begley 17. Celebrity show host with dyslexia (first name) 18. “___ out and touch, somebody’s hand, Make this world a better place if you can” by Diana Ross 19. “____’s Run” novel 21. Spokesman for the National Down Syndrome Society, John 23. Can be a challenge to navigate through it..... 24. Raise, of taxes for example 26. __ Lanka 27. COPD awareness campaigner, Anderson 28. Beach Boys singer who has struggled to overcome depression 31. CSI evidence 33. “Stand ___ me” 34. Everyone in trouble wants one..... (2 words) 38. Hawaiian garland 39. Therefore 40. E-mail subject line intro 41. Makes a vital difference in a critical situation (3 words) 47. Boxing org. 48. Gold symbol 49. Let it ___! 50. Miss the way 52. ____ Sorvino, who had to overcome severe asthma 55. “Easter Seals” spokesperson, Pat 56. Comedian Jack, who stayed in good spirits despite cancer 58. Guy 59. Young person 60. Lady 62. What’s the ___? 63. Connect 64. Real life angel, Downey

DOWN 1. Flying Nun who had to fight osteoporosis (last name) 2. Windows version 3. Cancer Schmancer writer (first name) 4. Blues great who was blind 5. Hawaiian hawk 6. “I did it __ way” Frank Sinatra 7. Frank 8. Liquid container 9. Way in 11. Open a little 12. Without 13. Medical scan 14. Retiring 16. Desperate attempt (3 words) 20. Solitary person’s solution (3 words) 21. Time measurement 22. Electrical giant 24. Subject for serious debate (2 words) 25. Whatever 29. Using lines 30. Followed 32. Surprise expression 34. “One ___ over the cuckoo’s nest” 35. “The end is __ yet” 36. Actor’s signal 37. Curve 42. Former Miss Universe who has campaigned for action against AIDS : Justine ____ 43. ___ Allen, model and TV actress who has supported disability causes 44. Degraded home 45. Lighted 46. Popular Mexican singer who lost her life tragically 51. Above 53. End of a prayer 54. Unethical 55. Champion of ADA in the Senate, ___ Dole 56. Cholesterol type 57. Neither’s partner 58. It can be honey baked.... 61. St Louis locale

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THE LESSONS TRAGEDY CAN TEACH US

We will continue to invent the future through our blood and tears and through all our sadness. We will prevail— Nikki Giovanni, poet and professor, Virginia Tech University

s it does every April 16, the District of Columbia celebrated Emancipation Day this year. The holiday commemorates legislation that President Lincoln signed 145 years ago, ending slavery in Washington D.C. As a local government employee, I had the day off, and looked forward to an extended weekend of leisure. An English muffin, a cup of tea and a dose of CNN seemed the perfect way to start the morning. But as I turned on the television, my day took a sharp turn. I was astounded. A massacre at my alma mater? How could such a tragedy occur in such the wonderfully serene milieu of Virginia Tech? Though I’ve seen a lot as a mental-health professional over the last 30 years, as a Hokie (our school mascot), I was devastated and numb.

After all, the Virginia Tech community is extremely close-knit one and we’re generally greatly supportive of one another. Things like this don’t happen to us—or do they? It took me several hours to regain some composure and begin to explore what happened and why. The truth is that such a tragedy can happen anywhere and we’re all at risk. Approximately 54 million Americans, in any given year, suffer from some kind of mental disorder. Hitting so close to home, I tried to think of ways to make sense of such a catastrophic event. I think we are more vulnerable to them because of our ignorance of the potential impact of mental illness. I would define this term as a disease that triggers an inability to manage the commonplace challenges and practices of daily life. Although there are more than 200 classified forms, some of the more recognizable disorders are depression, bipolar disorder, dementia, schizophrenia and anxiety. They may show up as mood swings, changes in behavior and social isolation. While genetic factors and biochemical discrepancies or a grouping of these may be at the root of the problem. But with proper care and treatment, many individuals can better cope and some may even recover. The operative words here are ‘proper care’ and ‘treatment.’ Dr. Anand Pandya, who specializes in disaster psychiatry with the Thalian Mental Health Clinic at Cedars Sinai in Los Angeles, says of the Virginia Tech tragedy: “People will be nervous about this for a very long time.” Though there is more of a spotlight on the homicidal young man at the center of that massacre, Pandya says that people with mental illness are more often a greater threat to themselves than they are to others. “What we know from research,” he adds, is that “they tend to be victims rather than perpetrators of violence.” Even so, in recent years, we’ve seen a disturbing spike in mass murders at the hands of teens, which makes it is imperative for parents to identify and address mental illness in their adolescent children. According to experts, psychological disorders, schizophrenia and bipolar disease, in particular, often surface during the college

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years. Adjustments linked to puberty and the pressures of being in college, can be significant contributors. Although there are no clear-cut answers about who will be a danger to himself or to others, experts identify these warning signs: In adults: Confused thinking; prolonged depression, sadness or irritability; feelings of extreme highs and lows; excessive fear, worry and anxiety; social withdrawal; dramatic changes in eating or sleeping habits; strong feelings of anger; delusions or hallucination; growing inability to cope with daily problems and activities; suicidal thoughts; denial of obvious problems; numerous unexplained physical ailments; substance abuse. In older children and pre-adolescents: Any of the above signs of adult mental illness, plus defiance of authority, truancy, theft, and/or vandalism; intense fear of weight gain; prolonged negative moods or thoughts of death; and frequent outbursts of anger. In younger children: Changes in school performance; poor grades despite effort; refusing to go to bed or school; hyperactivity; persistent nightmares; persistent disobedience or aggression; frequent temper tantrums. Medication may help, along with therapy and support or self-help groups, where one can talk with others who have experienced similar problems, and share valuable information and advice. Beyond traditional support groups, having a support system of friends and family is invaluable. Therapy can also be helpful to the individual with mental illness, and also his or her family members. Particularly when are dealing with a child, getting therapy as a family is much more effective, says to Dr. Pandya. As a society, we do a poor job managing mental illness, because we often ignore or deny its presence. Even within ourselves, we may try to explain away warning signs that indicate that we, or someone close to us, is experiencing abnormal or uncommon feelings. Reading up on mental-health issues and communicating with mental-health experts, can help us learn what steps to take to support an individual in need.

massacre became a victim of his own torment. It is ironic that he took his own life on Emancipation Day, as if he were seeking to emancipate himself from an unbearably painful existence. Had the system worked properly, and the people around him been suitably educated about the signs of mental illness, itâ&#x20AC;&#x2122;s possible that we might not be having this discussion. But we canâ&#x20AC;&#x2122;t go back, and pointing fingers is useless. We may not be able to change what has happened in the past, but we can certainly help create a healthier future. Families and communities need to be aware, ready and willing to address the needs of a member displaying symptoms of mental illness. The Virginia Tech tragedy has re-instilled the importance of paying attention to the signs and addressing a problem as soon as possible. Let us not have another Virginia Tech or Columbine. Prevention is everything. by Gale Alexander Kamen, PhD Educational Consultant and Education & Training Specialist, D.C. Government Department of Mental Health Sources for further information on Mental Health Issues: American Psychiatric Association 1400 K Street, NW Washington, DC 20005 888-357-7924 Knowledge Exchange Network 5600 Fishers Lane, Room 13-103 Rockville, MD 20857 800-789-2647 American Psychological Association 750 First Street, NE Washington, DC 20002 800-374-2721 or 202-336-5500 National Alliance for the Mentally Ill (NAMI) 200 N Glebe Road, Ste. 1015 Arlington, VA 22203-3457 800-950-6264 or 703-524-7600 National Institute of Mental Health (NIMH) Information Resources and Inquiries Branch 5600 Fishers Lane, Room 7C-02 Rockville, MD 20857 301-443-4513 In Crisis: 800-273-TALK

The young gunman at the center of the Virginia Tech

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BBQ Treat One package veggie BBQ Ribs from Gardenburger Serve with: Tahini Carrot Salad 1 c carrot, shredded _ stalk celery, finely chopped 1 small shallot, finely chopped 1 t raisins 1 T almonds, shredded Toss with Tahini salad dressing and almonds EVENING TREAT â&#x20AC;&#x201D;Hot or cold, sugar-free, decaffeinated soy chai latte â&#x20AC;&#x201D;Hot chocolate almond or soy milk www.aliveandwell.tv

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