Barrow Magazine - Volume 21, Issue 1, 2009

A magazine for the friends of Barrow Neurological Institute of St. Joseph’s Hospital and Medical Center

WORLD-CLASS CARE

Specialized care attracts patients from around the globe

Glitz, Glamour & Golf The Big Three raise millions for Barrow

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Volume 21, Issue 1, 2009

Opening thoughts n this issue of Barrow magazine, you will meet six diverse patients who have one thing in common—each received lifechanging care at Barrow Neurological Institute.

Fifteen-year-old Ilya Morch of Denmark traveled half-way around the world for treatment of a cerebral cavernous malformation, an abnormal cluster of blood vessels in her brain. Mark Carlson came from Joliet, Illinois, for treatment of disc degeneration in his neck that was robbing him of his ability to perform his job as an MLB umpire. Isobel Malloch-Brown, 15, flew from the United Kingdom for the treatment of structural problems in her brain that were causing a variety of frightening symptoms.

Their care, and the care of the three other patients highlighted in this issue's cover story, would not have been possible without the support of benefactors like you.

Benefactors are the lifeblood of Barrow, enabling our institute to advance the care of patients with complex neurological problems. And in this issue of Barrow, you’ll read about some of the many individuals and groups who are contributing significantly to our mission. First up in our magazine is an article about Barrow’s three biggest charity events—the Barrow Grand Ball, Celebrity Fight Night, and Lou Grubb Friends Fore Golf. Other articles describe the important contributions of groups like Students Supporting Brain Tumor Research and the Parkinson Network of Arizona, and individuals like Leona and Harry Helmsley.

Finally, you'll learn how you can continue your support of Barrow by contributing to a project to build the Ashlyn Dyer Aquatic Center or by including Barrow Neurological Foundation in your estate planning.

On behalf of the physicians, staff, and patients of Barrow, we want to thank you for helping us provide world-class care that is changing the lives of patients here and around the world.

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Sincerely,

Robert F. Spetzler, MD Director, Barrow Neurological Institute Foundation

Mary Jane Crist Chief Executive Officer, Barrow Neurological

On our cover: Ilya Morch, 15, traveled from Denmark to Phoenix for brain surgery at Barrow Neurological Institute. Her remarkable story begins on page 8.

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4: Glitz, glamour and golf Three big charity events raise vital funds for Barrow—Barrow Grand Ball, Celebrity Fight Night, and Lou Grubb Friends Fore Golf.

9: World-class care Meet six patients who came to Barrow for the institute’s highly specialized care: Ilya Morch of Denmark, Mark Carlson of Joliet, Illinois, Michael Kerzie of Phoenix, Isobel Malloch-Brown of the United Kingdom, Kasey Gray of St. Paul, Minnesota, and Kylee Crews of Maricopa.

22: Barrow Olympics Building fitness and teamwork.

24: Ashlyn Dyer Aquatic Center Special project team works to raise funds for new therapeutic center.

27: What’s happening around Barrow 28: Benefactor briefs

Contents

30: Research update 32: Students Supporting Brain Tumor Research Student fundraisers visit Barrow to learn about brain tumor surgery.

34: Estate planning Make sure your legacy has a voice.

Catherine Menor Editor/writer Catherine.Menor@chw.edu

Sally Clasen, Melissa Morrison, Sarah Padilla, Christina Vanoverbeke Contributing writers

Robert F. Spetzler, MD Director Barrow Neurological Institute®

Justin Detwiler Art director/designer

Brad Armstrong; Gary Armstrong; Jeff Noble; D Squared Productions, Murphy/Scully Photography

Mary Jane Crist, CFRE CEO, Barrow Neurological Foundation

Panoramic Press

• How to Reach Us • Barrow is published twice a year. We welcome your comments, suggestions and requests to be added to or deleted from our mailing list. Call 602-406-1041 or send mail to Barrow, Office of Philanthropy, St. Joseph’s Hospital and Medical Center, 350 W. Thomas Rd., Phoenix, AZ, 85013. Please include your name, address, and telephone number in all correspondence. Visit us online at www.SupportBarrow.org.

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by Catherine Menor

glitz, glamour, and golf Charity events raise vital funds for Barrow hey are the Big Three of Barrow Neurological Foundation (BNF) charity events—the Barrow Grand Ball, Celebrity Fight Night, and Lou Grubb Friends Fore Golf. Each year between January and May, these very different events raise a combined $3 to $4 million for Barrow Neurological Institute.

“The Barrow Grand Ball, Celebrity Fight Night, and Lou Grubb Friends Fore Golf are critical to our ability to fund research, medical education, and patient care at Barrow,” says Mary Jane Crist, CEO of BNF. “What has made them so successful is that they give hundreds of Barrow friends and supporters a way to contribute to the institute while also having a great time.”

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The queen of Barrow fundraisers is the Barrow Grand Ball, presented in January by the Barrow Women’s Board. Despite a sagging economy, the 2009 Ball, held Jan. 17 at the Arizona Biltmore, raised more than $2 million. In all, the Barrow Grand Ball has raised about $36 million for Barrow in just 44 years.

“People from other non-profits have asked me how we were able to do it. I’ve told them it was because of Barrow,” says Marilyn Harris, who co-chaired the Ball with Judy Shannon.

Shannon says, “Marilyn and I were concerned about the economy. We are extremely grateful to our long-time and new patrons who we know stretched to support the Ball this year.”

The Barrow Grand Ball

Dr. and Mrs. Randall Porter; Dr. and Mrs. Robert Spetzler; and Dr. and Mrs. Nicholas Theodore

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A surprise anonymous gift of $50,000 the night of the Ball put them over the $2-million mark. “That was a real celebration for us,” Shannon says.

The Barrow Women’s Board presents the black-tie dinner and dance to a select crowd—just 324 attended this year, typical for the Ball. “The fact that it’s such an intimate ball makes it very special to those who attend,” says Shannon.

Harris and Shannon would like to recognize Mary Ellen McKee, chairman of the Women’s Board, for her leadership in securing Ball commitments and the following benefactors for their extraordinary support of the 2009 Barrow Grand Ball: • Doris and John Norton – underwriters of the Ball • Nancy and Lee Hanley and the Hanley Family Foundation – lead gift for the Center for Adaptive Brain Function • John W. Dawson – special gift for the Barrow Children’s Cleft & Craniofacial Center and the Scientific Enrichment Program for Students • Pat Goldman – Chief of Staff, renovation of Goldman Auditorium.

For Shannon and Harris, co-chairing the Barrow Ball was an opportunity to work together again on a major fundraiser and to lead a group of women they describe as “phenomenal.”

“To be able to fundraise for an institution like Barrow is a privilege we all hold dear,” says Shannon. (continued on page 4)

This page, clockwise from top right: Dr. and Mrs. Volker Sonntag; Cathy and Tom Reahard; Linda Hunt, president of St. Joseph’s Hospital; Doris and John Norton; Judy Shannon and Marilyn Harris, Ball co-chairs, with John Dawson; Nancy and Lee Hanley; Mary Ellen McKee, chairman of the Women’s Board, with her husband, Robert.

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Celebrity Fight Night

Clockwise from top left: Lucia Micarelli performed at Celebrity Fight Night XV; Kurt Warner received the Sports Leadership Award; Michael Phelps accepted the Sports Achievement Award from Muhammad Ali; David Foster directed the CFN show; Muhammad and Lonnie Ali presided over the event.

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Guests see the glitz and glamour of Celebrity Fight Night—stars in dazzling gowns, top singers performing live on stage, exciting packages auctioned live, and, presiding over it all, Lonnie and Muhammad Ali. What they may not see is the important work made possible by this blockbuster charity event.

Celebrity Fight Night is the primary source of funding for the Muhammad Ali Parkinson Center (MAPC), a comprehensive resource center that complements Barrow’s clinical care with educational, recreational, and support programs for patients and their families. The MAPC may be the largest support network in the country for patients with Parkinson’s disease and other movement disorders.

“Celebrity Fight Night’s ongoing support makes a tremendous difference for the Muhammad Ali Parkinson Center,” says Abraham Lieberman, MD, director of the MAPC. “Their support is the backbone of so much of what we do—from education and exercise programs to support groups, the Parkinson Registry, and Ali Care.

Without the yearly contribution from Celebrity Fight Night Foundation, we would be unable to offer all that we do.”

This year’s event on March 28 attracted a crowd of 1,200 and raised $6.6 million for the MAPC and other non-profits.

A high point of the event was the presentation of the following Muhammad Ali Celebrity Fight Night Awards to leaders in the sports, entertainment, and business communities who best represent the qualities of the Champ and his fight to find a cure for Parkinson’s disease:

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• Entertainer Award – Oscar-winning actor, director, and producer Forest Whitaker • Sports Achievement Award – Olympic Gold Medalist swimmer Michael Phelps • Sports Leadership Award – Arizona Cardinals quarterback Kurt Warner • Entrepreneur Award – businessman and philanthropist Stewart Rahr.

Rahr surprised the crowd by donating $2 million to Celebrity Fight Night during his acceptance speech.

GRAMMY Award-winning musical director David Foster directed a show that included performances by Josh Groban, Jordin Sparks, Jon Bon Jovi, Michael Johns, Roy Firestone, Charice, Lucia Micarelli, William Joseph, and Ethan Bortnick.

The live auction featured such items as dinner at Reba McEntire’s Beverly Hills home ($600,000), dinner with Josh Groban in Beverly Hills ($375,000), and a one-of-a-kind customized Tony Hawk DUB edition 4WD Jeep Wrangler ($100,000).

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Below, guests enjoy a toast at the Lou Grubb Friends Fore Golf dinner. Bottom, Tara Hitchcock and Dennis Sage were emcees at the dinner.

Lou Grubb Friends Fore Golf

This year’s Lou Grubb Friends Fore Golf (LGFFG) event took on a new dimension when it became part of a wedding weekend for a grateful Valley couple.

Melissa Austin and Tyler Button, who tied the knot the day after the tournament, made the annual golf event part of their wedding weekend. About 15 members of their wedding party joined the happy couple at the LGFFG dinner on April 23 at the Scottsdale Resort.

“We’ve been going to this event ever since Barrow saved Tyler’s life,” explains Austin.

“We’re just so grateful to BarMelissa Austin and Tyler Button. row.”

Thanking Barrow is what Lou Grubb Friends Fore Golf is all about. Barrow became the LGFFG beneficiary after long-time Valley resident and businessman Lou Grubb underwent surgery for a ruptured aneurysm at Barrow in 1986. “The golf tournament is my way of paying them back,” says Grubb.

LGFFG also raises money for St. Joseph’s Hospital and Medical Center. Over the years, the popular Valley charity golf event has raised about $3.5 million for Barrow and St. Joseph’s.

This year’s event featured a “Starlight Gala on the Plaza” kick-off dinner and auction on Thursday evening

followed by an 18-hole golf tournament and awards dinner on Friday at McCormick Ranch Golf Club.

About 360 guests attended the dinner, and 204 golfers played in the tourney. A volunteer squad of 47, directed by Julie Alvarado, director of Philanthropic Innovation, and Ani Gurlekian, coordinator, made the B A R R O W

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event run smoothly.

Right, Lou and Evelyn Major sponsors were Grubb with emcee Tara Angelica Textiles, DPR ConHitchcock. struction, Health & Wealth Raffle vendors, Dan and Kathy Grubb, Panoramic Press, Symmetry Software, and Xerox. Committee members were L. Don Brown, Scottie Button, Debbie Castaldo, Mary Jane Crist, Wayne S. Doran, Hamilton Espinosa, Booker T. Evans, Cassandra Groh, Lou Grubb, William Hunt, Stuart Kirk, Gene L’Heureux, Roger Maxwell, Mike Medici, Joshua Miller, Loui Olivas, PhD, Tom Reahard, Anne Robbs, Dennis Sage, and Dennis Scully. ■

Participants of Lou Grubb Friends Fore Golf enjoyed Party Putt Golf, a cigar bar, dinner, and an 18-hole golf tournament.

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world-class care

arrow Neurological Institute is known throughout the world as the place to go for

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treatment of the most complex spine and brain problems. As a result, patients come

from around the globe for care that is available at few other neurosurgical centers.

By contributing to Barrow, you fund the medical education, research, technology, and

clinical care that keep the institute at the forefront of medicine and that give hope and healing to patients like the six you will meet on the following pages.

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ilya morch Teen comes from Denmark for treatment of rare brain disorder

by Carmelle Malkovich or 15-year-old Ilya Morch of Denmark, traveling to Arizona did not include the typical trip to the Grand Canyon. Instead, her visit to Arizona had a much more significant purpose—a life-changing brain surgery to treat a rare neurological disorder.

Ilya successfully underwent treatment earlier this month at Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center for a cerebral cavernous malformation (CCM), a condition in which abnormal clusters of blood vessels are embedded in normal brain tissue and can cause brain hemorrhaging.

At age six, Ilya began experiencing severe headaches that would last for up to two weeks. She was originally diagnosed with cancer, but surgeons in Denmark found three CCMs, benign lesions, that were the cause of her headaches. Once diagnosed, Ilya underwent five neurosurgeries in Denmark. One malformation proved too risky to treat since it was located at the top of the brain stem. The risks of surgery included Spetzler held a significant chance for paralysis my life in his and loss of speech and memory.

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hands and has Signs of paralysis given me a “We were concerned with the risks of surgery and wanted to wait chance to live as long as possible to operate,” says a full life.” Karin Morch, Ilya’s mother. “How-

ever, small brain bleeds from the malformation began weakening the right side of Ilya’s body.”

In October, Ilya’s left eye began to droop, a sign that paralysis was starting to form on the right side of her body as a result of brain hemorrhaging. Ilya and her family had to decide between undergoing a risky surgery that could cause paralysis or becoming paralyzed on her right side. After researching various neurological centers throughout Europe and the United States, Ilya’s family and physicians found Barrow to be the best center for her treatment.

“After Ilya lost movement of her left eye, we consulted with her physicians in Denmark and determined that surgery was the best option,” says Karin.

“We wanted to find the best place in the world to treat Ilya, and that’s when we found Barrow.”

Ilya Morch

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Larger than a golf ball, the malformation and its difficult location made Ilya’s case very risky, but Robert Spetzler, MD, director of Barrow and internationally renowned neurosurgeon, successfully removed the malformation using a surgical approach that was researched and developed at Barrow. The lateral supra cerebellar infratentorial approach separates the top and bottom compartments of the brain to reach its

deepest structures and provide wider exposure to the lesion. A unique laser was inserted into the brain with a fiber to core out a portion of the malformation.

“The large size and difficult location of Ilya’s lesion make her case remarkable,” says Dr. Spetzler. “It’s the most dramatic example for which this approach has ever been used.”

Ilya’s cavernous malformations are an inherited condition—her father and three siblings have also been diagnosed with malformations. Her father was not diagnosed until after Ilya’s condition was identified, and only she and one sibling have malformations that are symptomatic.

All in the family

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Ilya will need physical therapy, but she is expected to make a full recovery and participate in activities that she’s never been able to do before.

“I can participate in sporting activities now, and I’m looking forward to not having a constant headache,” says Ilya. “Dr. Spetzler held my life in his hands and has given me a chance to live a full life.” ■

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Robert Spetzler, MD, describes Ilya’s surgery to her parents, Karin and Kristian.

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mark carlson MLB umpire is back in action after neck surgery at Barrow

by Sally Clasen

t’s not uncommon to read sports stories about how professional athletes return to action after recovering from career-threatening injuries. But what are the odds of two Major League Baseball (MLB) umpires having the same neck surgery performed by one surgeon in the span of a month to repair occupational injuries—and then report back to work?

Those game odds turned out to be fairly high for Mark Carlson and a fellow MLB umpire who are making the calls again after having neck surgery performed by neurosurgeon Volker Sonntag, MD, at Barrow Neurological Institute in spring 2008.

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While umpire injuries fly under the baseball-news radar, the risk of harm is great despite wearing protective gear, particularly head and neck injuries caused by repetitive and sudden movements, and explosive hits by bats, balls, and, sometimes, even players. “You can go a week without getting hit, but then again you can get hit in every game,” Carlson explains of the random but certain hazards inherent with baseball officiating.

Now in his 11th year as an MLB ump, Carlson, 39, of Joliet, Illinois, says it wasn’t an isolated incident on the field that caused his neck problems but a series of factors. ”I’ve taken multiple foul balls and fast pitches to the face and neck, which obviously caused some problems, but that’s just one part of the wear and tear of baseball. It’s also different beds and pillows, traveling on airplanes every three days—it all takes a toll on the body,” he explains.

About two years ago Carlson started experiencing numbness and tingling down his arms and hands, and decreased mobility in his neck, problems that an MRI eventually revealed were the result of disc degeneration. Carlson tried treating the symptoms conservatively with oral

Pain in the neck

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“Umpires are professional athletes, and they need to be fine-tuned as well.”

Volker Sonntag, MD

steroids, physical therapy, and epidural injections to reduce the inflammation and pain caused by the damaged discs. His issues continued, however, to the point where he had limited range of motion and the pain was “becoming unbearable.”

Carlson and his co-worker were referred to Dr. Sonntag, who sub-specializes in spine surgery. In May, one month after his colleague’s surgery was performed

by Dr. Sonntag, Carlson also underwent an anterior cervical discectomy with fusion (ACDF).

The goal of ACDF is to relieve the pressure placed by damanged discs on nerve roots and the spinal cord in the cervical (neck) area. During the procedure, surgeons remove the degenerative or herniated discs and any bone spurs that have developed, and then graft, or fuse, the adjacent vertebrae with bone plugs and metal plates. The fusion helps promote bone growth and stabilizes the vertebral structure where the diseased discs were removed. ACDF is performed through a small incision in the front of the neck. During Carlson’s surgery, Dr. Sonntag removed three herniated discs and fused three levels, C5-C6, C6-7, and T1.

“Umpires are professional athletes, and they need to be fine-tuned as well,” Dr. Sonntag says. “Most people, regardless of their occupation, experience disc degeneration as they get older, but the nature of baseball makes umpires more prone to injury and exacerbates the degeneration process. If you don’t take out the diseased disc, you’ll have a greater chance of instability down the road and potentially abnormal curvature of the spine.”

Dr. Sonntag adds that most patients who undergo cervical fusion surgery will regain full mobility when their treatment is combined with physical therapy and “extensive therapy to achieve a level necessary for professional umpiring.”

While there was no guarantee either umpire would return to his career, Carlson credits his return to work to the ACDF surgery, along with his commitment to post-operative rehabilitation, which helped improve his range of motion and increase the strength of his neck muscles so he could umpire again. Yet, the degree of

Career tune-up

Carlson’s degeneration and surgery complexity was a sports career odds-beater.

“Dr. Sonntag told me he had never performed a three-level fusion on someone who returned to a contact sport,” Carlson explains. “Almost immediately after surgery, I saw great improvement, and the numbness and tingling were gone.”

Carlson missed the entire 2008 baseball season. He spent that time recovering and considering the possibility of having to look for a new job, but he was able to report to full duty in 2009 starting with spring training. His hectic work schedule includes 22 spring training games and up to 150 during the regular season with a day off every three weeks.

“My range of motion is a work in progress, though it’s much better than before the surgery. I feel great and I’m good to go,” he says. “I see myself working for many more years.” ■

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by Melissa Morrison

michael kerzie Unusual approach to lumbar fusion has pilot flying in no time

ichael Kerzie has spent more than half of his nearly 50 years flying helicopters—for the U.S. Army and now for Air Evac, Inc., an air ambulance company.

A helicopter in flight can be as bumpy as racing a dragster down an unpaved road. The rough ride wears out the body’s shock absorbers just as it wears out those on a car. Eventually, the lowest disc in Kerzie’s back was worn into oblivion, leaving bone to grind against bone.

Kerzie shrugged off the pain for three years, popping Motrin and unable to stay on his feet longer than 15 minutes before back pain forced him into a chair.

“It wasn’t acute pain, but your back is everything, to the point where when you’re standing still you start sweating because you can’t take the pain anymore,” he says.

“It affected everything,” his wife, Cindi, adds, “He’s an active duty military guy, used to doing phys-

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ical fitness, running, and whatever he wanted to do.

And none of that was happening anymore.”

Kerzie did everything he could to avoid surgery, including inversion therapy, which meant hanging upside down every day to take pressure off his discs.

Finally, Cindi, a trauma ICU nurse at St. Joseph’s Hospital and Medical Center, convinced him to visit neurosurgeon Nicholas Theodore, MD. Dr. Theodore had joined the Navy as a medical student and practiced as a doctor for the U.S. Marine Corps in Okinawa, Japan, and later as chief of neurosurgery at the Naval Medical Center in San Diego. He had treated many helicopter pilots for degenerative disc disease like Kerzie had.

“When I look at Mike, I see somebody who’s very motivated, who’s trying to do his job but can’t because he’s incapacitated with pain,” says Dr. Theodore, director of the Neurotrauma Program at Barrow Neurological Institute.

The surgeon determined that the answer was an anterior lumbar interbody fusion (ALIF), a less familiar approach to a fairly common malady, because it accesses the patient’s spine through the belly, not the back.

“It’s a classic example of finding the best treatment for a given problem,” Dr. Theodore says. “The neat thing about that operation is we don’t go through any back muscles, so literally he was up walking the day after surgery with no back pain.”

Working with cardiovascular surgeon R. Jay Standerfer, MD, Dr. Theodore replaced what was left of the damaged disc between Kerzie’s L5 and S1 vertebrae with two small threaded cages. The cages were impregnated with a protein intended to encourage bone growth so the two vertebrae would eventually fuse. Then he stabilized the area with a plate.

Kerzie had the operation on October 16, 2007. After three days in the hospital and three months “to come

out of the fog,” as he puts it, Kerzie was back to flight status. “I haven’t taken a pain pill since,” he says.

He is also back riding bikes, swimming, and wakeboarding at Saguaro Lake.

He wanted to thank Dr. Theodore by giving him a helicopter ride, but another patient who was also a pilot beat him to it.

“I don’t know what I can do to pay him back,” Kerzie says. “I just know he basically has given me my life back.”

For his part, Dr. Theodore says his reward came when he ran into a flight-suited Kerzie in an elevator at St. Joseph’s, where Kerzie and his Air Evac team had just dropped off a patient.

“Nothing made me happier than to see him able to get back to work doing what he wants to do, which is bringing us more patients,” Dr. Theodore says. ■

“I don’t know what I can do to pay him back. I just know he basically has given me my life back.”

Michael Kerzie

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isobel malloch-brown UK teen flies to Barrow for surgery for complex brain problem

by Catherine Menor

or a year, 15-year-old Isobel Malloch-Brown of the United Kingdom (UK) suffered troubling neurological symptoms that sent her from doctor to doctor and left her parents, Trish and Mark, desperate for answers.

Finally, Trish says, “we sought help on the other side of the Atlantic.”

That journey took them first to Washington, DC, for a diagnosis

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and then to Barrow, where Curtis Dickman, MD, operated to address the underlying structural problems that were causing Isobel’s odd symptoms.

Isobel’s health woes began in January 2008 with headaches and what her mother, Trish, calls “drop attacks.” “She would crumple to the ground like a rag doll, but not lose consciousness,” Trish explains.

The odd symptoms multiplied—insomnia, tingling in her hands and feet, breathing difficulty, laryngitis, problems with concentration.

Trish and Mark took Isobel to a London hospital for five days of observation. She was seen by several doctors, including a neurologist and neurosurgeon. An MRI detected a Chiari malformation— a structural defect in the cerebellum, the part of the brain that controls balance—but Isobel’s physicians did not believe that to be the cause of her problems.

They concluded that migraines were to blame and recommended relaxation exercises and treatment for insomnia.

But her parents were unconvinced, and when Isobel began having seizures, they knew they had to act.

Trish, who along with the couple’s four children, was born in the U.S., arranged for Isobel to see a neurosurgeon in Washington, DC, a personal friend of the family. The doctor reviewed the teen’s

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MRIs and identified several structural problems in Isobel’s spine and skull.

The Chiari malformation, which may have been present at birth, had produced a smaller-than-normal compartment for Isobel’s brain stem and cerebellum, putting pressure on these two structures. Complicating this problem was a basilar invagination, a rare condition in which the upper part of the second cervical vertebra moves upward into the intracranial space, placing pressure on the brainstem and the upper cervical spinal cord.

The couple took this diagnosis back to the United Kingdom where a medical panel concurred with the neurosurgeon’s findings, clearing the way for further testing and possible surgery. But when Trish and Mark realized that surgery in the UK would be many months away, they decided to turn once again to the U.S. medical system.

Determined to get the best possible surgeon for Isobel, Trish and Mark asked the DC neurosurgeon for his recommendation. He referred them to Dr. Dickman because of his reputation as one of the foremost neurosurgical experts on the area involved in Isobel’s condition.

“Looking at what Barrow and Dr. Dickman have done, it was obvious to us that he was the right choice,” Trish says.

Dr. Dickman says that Isobel’s condition was a complex one. “Her problem was complicated by the fact that she had compression in front of and behind the brainstem and spinal cord. This potentially would require two separate surgeries—one through the mouth to relieve the anterior (front) compression and a second surgery through the back of the skull to relieve the posterior (back) compression and to fuse her unstable “Looking at what Barrow spine,” Dr. Dickman explains. and Dr. Dickman have “I was able to done, it was obvious to solve her problem with a single us that he was the right surgery perchoice.” formed from behind.”

Trish Malloch Brown Dr. Dickman and his surgical team operated on Isobel on Feb. 18.

First they performed a Chiari decompression, a procedure in which the back of Isobel’s skull and the upper two vertebrae were removed to relieve the pressure on the rear of her cerebellum, brainstem, and spinal cord. Then the team repositioned her skull and cervical spine in an extended position to relieve the pressure on the front of her brainstem and spinal cord. They used screws and rods to permanently fix-

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ate these structures, and took bone grafts from Isobel’s pelvis to fuse the skull base and upper cervical spine.

“Her surgery was successful in relieving her neural compression and correcting her deformity of the skull and cervical spine,” says Dr. Dickman.

Isobel’s week-long stay at Barrow could not have been better, says Trish. “I must say, the team around Dr. Dickman and certainly the ICU staff were phenomenal. It’s a totally different level of care—not just the surgery, but also the care afterward.”

And Isobel? In the months since her surgery, nearly all of her symptoms have gone away. She continues to deal with headaches and exhaustion, but “I’m definitely much better than I’ve been in a long time,” she says.

The most difficult part of the whole experience, Isobel says, was being told that her condition was all mental. “I was just getting really annoyed because the doctors kept saying, ‘You’ll be fine. You’re just getting stressed out.’”

Isobel has decided that she wants to reach out to other children in the UK battling the kind of problems she did. Sarah Ferguson, the Duchess of York, has asked her to be a Teen Ambassador and write an article about her experiences for her charity, Children in Crisis. ■

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by Catherine Menor

kasey gray Minnesota baseball coach back in the game after a life-threatening brain condition

asey Gray had always been an active guy who could depend on his body to perform well during athletic endeavors. At 38, he was living his dream as the coach of a high school baseball team in St. Paul, Minnesota. His passion for the sport is reflected in the fact that he led his team to a 15-8 record and number-one Class A ranking last year.

So, when he badly fumbled a simple throw to his wife in early July 2008, he immediately took notice.

“I didn’t even come close to throwing the ball to her, and she was only 10 feet away,” he says. “That’s when I knew something was wrong.”

Just a few days earlier, Gray had slurred his words while reading to his two children during a campout in northern Wisconsin. With two strikes in quick succession, Gray knew it was time for a trip to the hospital.

At a local emergency department, physicians discovered the cause of Gray’s misthrow and slurred words: a cerebral cavernous malformation in his brain stem.

A cerebral cavernous malformation (CCM) is an abnormal cluster of small blood vessels embedded in normal brain tissue. The walls of the vessels in a CCM are thinner than normal and prone to bleeding. In Gray’s case, the CCM had already bled some, causing his symptoms.

Continued bleeding from the CCM could be lifethreatening because the brain stem is the part of the brain that conducts all nervous impulses from the body to the brain and vice versa. Even a small bleed

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into this tissue can cause serious neurological problems, such as paralysis, vision change, speech impairment, and loss of consciousness.

Gray’s doctor said that the blood might reabsorb and the CCM might not bleed again. He recommended doing a second MRI in six weeks.

But the CCM did not cooperate. Gray’s headaches returned, and a string of other symptoms struck with a vengeance—word slurring, right hand coordination problems, double vision, and foot dragging. Soon, Gray had to move downstairs because he could no longer climb the stairs in his house.

“Each day I lost a piece of me,” he says. “I felt like I was losing control of my body.”

On July 20, Gray landed back in the hospital when his right side went totally numb. His condition was worsening rapidly, and doctors said he needed surgery right away.

Minnesota neurosurgeon Eric Nussbaum, MD, reviewed Gray’s MRIs and told him, “This is more than I can take care of. You need to see Dr. Robert Spetzler.”

Gray’s wife, Theresa, had contacts in Phoenix and

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Kasey Gray is coaching baseball again after a life-threatening cerebral cavernous malformation. Photos from Saint Paul Pioneer Press.

Theresa and Kasey Gray with their children, Gabi and Mac. quickly made arrangements for her husband to fly to Barrow for surgery. “Although I didn’t want to leave home and my kids, we felt like we had to make this happen,” Gray says.

By the time Gray arrived in Phoenix on July 22, he was worried that he was at risk of dying. But as hospital staff wheeled him into a neurosurgery suite the next day, he met Robert Spetzler, MD, who looked at him and confidently said, “This thing is located close to the surface of the brain stem, a place where we can get it. Your chance of a full recovery is better than 90 percent.”

Dr. Spetzler and his team performed a six-hour microsurgery to remove the raspberry-shaped tangle of blood vessels, which had bled significantly, undoubtedly causing Gray’s rapid deterioration.

Using a surgical microscope and microsurgical instruments, Dr. Spetzler worked carefully to remove all of the abnormal tissue while sparing normal tissue.

After another week at Barrow, Gray flew back to Minnesota, where he underwent two weeks of intensive physical, occupational, and speech therapy in an inpatient rehabilitation center, and then continued rehabilitation at an outpatient facility. Slowly he regained his strength and coordination.

“I’m probably 80 percent recovered,” says Gray. His right ankle, shoulder, and hand remain weak, and he still slurs words sometimes.

But he has recaptured the things that are most important to him— time spent with his wife and children, and a job he loves.

“I feel like I have much of my life back,” he says. “I still have a way to go to do the things I want to do, but I’m back, and that’s all that counts. ■

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kylee crews

by Catherine Menor

Radical brain surgery gave woman a second chance at life eurosurgeon Kris Smith, MD, has helped many patients with difficult brain conditions during his years at Barrow Neurological Institute. But few have touched him as much as Kylee Crews, whom he operated on 11 years ago.

“She’s truly a miracle case,” says Dr. Smith. “She drives, she graduated from Arizona State University with honors. She’s totally functional… just an amazing, amazing case.”

The admiration is mutual. “God used Dr. Smith’s hands to do what he needed to do,” Crews says. “It was a second chance at life for me because I didn’t have a life before.”

Crews and Dr. Smith met when she was just 16. Since two years of age, Crews had suffered from epilepsy.

Seizures—sometimes only a few a day but sometimes as many as 15—made the child’s life difficult and uncertain. Crews remembers her first day at school as the day she tripped, fell, and had a seizure.

The problem was that Crews had been born with only one functioning brain hemisphere. Sometime before her birth, an artery in her left hemisphere had become atrophic, Dr. Smith explains, starving a large part of that half of her brain.

The left hemisphere was so damaged that it did little beyond causing seizures. But because the brain is very elastic and able to compensate for deficits, the right hemisphere took over for both sides, and, with extra effort, Crews was able to do most of the things others take for granted.

“I was...shocked that Having epilepsy meant that I had woken up. I could Crews had to take answer the nurse’s more than a dozen questions. I checked my pills every day. It made learning and eyes, and I could see.” fitting in harder. It made Crews selfconscious and Kylee Crews sometimes withdrawn. Crews took some special education classes and some mainstream classes; in the mainstream classes, she learned to sit at the back of class so other people wouldn’t notice should she have a seizure.

“I wasn’t a typical person,” Crews says. “Academically, I couldn’t be an average child. I had very few

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friends. My friends were the ones who really knew me and got past the seizures.”

The last straw for Crews came as she neared her sixteenth birthday. Everyone she knew was getting a driver’s license or talking about getting one. But when Crews asked her doctor to sign the paperwork saying that she was fit to drive, he declined and told her there was nothing more he could do, since medication was not controlling the seizures. He referred her to Barrow.

A neurologist at Barrow gave the teen three options: more medications, a pacemaker implanted in her brain, or surgery.

“I just sat there a good 15 or 20 seconds and flashed back over my life and said, ‘Go ahead with surgery,’”

Crews recalls. And later, as her neurosurgeon, Dr. Smith, told her of all the deficits surgery could cause— vision, speech, and memory loss—“I wanted to say ‘Stop talking! I just want to drive.’”

The surgery Dr. Smith performed involved disconnecting the left hemisphere from the right to stop communication between the two. Dr. Smith pondered the life-changing deficits the surgery would likely cause, and after much thought and consultation with others at Barrow, decided to disconnect the whole left hemisphere—except for the occipital lobe, the part of the brain responsible for vision.

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A post-operative MRI shows the area of Kylee Crew’s brain that was maldeveloped. The image also contains evidence of the minimal approach used in disconnecting the two hemispheres.

It was not an easy decision, says Dr. Smith. “We worried that if we tried to preserve her vision, she might still have seizures.”

Dr. Smith used a minimally invasive procedure that he developed at Barrow to disconnect the left hemisphere from the healthy right hemisphere, leaving the occipital lobe connections intact. The surgery was performed through one small incision and took six hours.

Crews remembers waking up in the intensive care unit after the surgery. “I was lying there shocked that I had woken up. I could answer the nurse’s questions.

I checked my eyes, and I could see.”

Dr. Smith walked in later and told her “I got everything—nothing more and nothing less.”

Six months after her surgery, Crews took the last of her anti-seizure medication and passed her driver’s test.

With each accomplishment, her confidence has grown.

She credits her parents—who told her “Do your best, and you’re going to find your own unique way”—her friends, and her faith for her remarkable journey.

“I love myself, and that’s something if you’d asked me 10 years ago, I wouldn’t have said,” says this young woman, who is now 27 and looking forward to her tenth high school reunion. “I’ll always be challenged in my life, and that’s okay because when I’m challenged and I succeed, I feel better about myself. I can do anything.” ■

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barrow olympics Building fitness and teamwork

by Sarah Padilla

sk a neurosurgeon to describe his or her week, and there’s one word you’ll almost certainly never hear: “relaxing.” Words like “grueling” and “intense,” on the other hand, are pretty common. So, one would think that at week’s end, most neurosurgeons would prefer to kick back with their feet up.

At Barrow, however, many residents and attending physicians have a different idea of what it means to kick back. These diehards trade in their scrubs to become weekend warriors—joining their colleagues for a 50to 100-mile road or mountain-bike ride and an intense volleyball match nearly every weekend.

What began years ago as a way for Barrow Director Robert Spetzler, MD, to encourage camaraderie and physical fitness among the neurosurgical team today has taken on a life of its own. In addition to the nearly weekly bike rides and volleyball games at Dr. Spetzler’s house, the neurosurgery program also hosts an annual Barrow Olympics, a rim-to-rim Grand Canyon hike in May, and the Hike from Hell in September.

What some might consider excessive, Dr. Spetzler considers necessary. “I’ve always felt that to be your best as a surgeon, you need balance in your life, and

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for me, it is fitness,” he says. “Not only do these physical adventures fulfill the desire to be fit, but they also clear your mind to be ready for the next major case.

For me and for many, physical outlets are key to maintaining equilibrium.”

The weekend crew includes neurosurgeons, residents, and fellows, as well as an assortment of researchers, nurses, and friends. Phil Pomeroy, Barrow’s vice president of Neurosciences, regularly participates, and some vendors have also become involved.

Brad Burling, a Barrow account specialist for a medical technology company, joined his first volleyball game in 1999 to help cultivate his business relationships. Ten years later, he participates in the weekly bike rides, the Barrow Olympics, and the annual hikes. Over the years, many of those initial business relationships have turned into close friendships.

“Being able to see into this small window of everyone’s life outside of work creates a bond that makes us all closer,” says Burling. “The neurosurgeons work in such an intense field, and the fact that they choose to spend their free time with their colleagues says a lot about their friendships.”

Strong relationships are a critical component to a program like neurosurgery, in which colleagues spend

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not only hours, but years, together in very high-stress situations. It’s also important to family members, who can benefit from each other’s support.

That’s one of the drivers behind the Barrow Olympics, which draws as many as 100 participants— including residents, fellows, attending physicians, and family members—to the homes of Dr. Spetzler and Volker Sonntag, MD, each spring. This year’s three-day event—Barrow’s 21st and primarily organized by Dr. Sonntag—was held the weekend of April 17.

In addition to being a unique bonding experience, the Barrow Olympics offers this competition-driven group another opportunity to highlight the best of the best. In past years, the event pitted residents against attendings; most years, it’s Barrow versus UCLA or the University of Utah. The activities include everything from rod cutting (a procedure often used in spinal surgery) to soccer, track, baseball, basketball, bike riding, swimming, and Frisbee football.

But regardless of which team has the most points— or the least bruises—at the end of the day, Barrow always comes out on top.

“When you look at the Neurosurgery Department and at Barrow as a whole, you’ll notice a sense of camaraderie that is truly unique,” says Dr. Spetzler. “All

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of our activities are designed to help cement the relationships among the residents and among their family members. We’re not only creating a positive work environment, but also lifelong friendships.” ■ ast year, chief residents Elisa Beres, MD, and Peter Maughan, MD, participated in the Arizona Ironman, a grueling 2.4-mile swim followed by a 112-mile bike ride and a 26.2-mile run. Not to be outdone, Robert Spetzler, MD, challenged them to the longest bike race, the LOTOJA. This 206-mile mountainous race starts in Logan, Utah, and finishes in Jackson Hole, Wyoming.

Although fully aware that the busy chief residents had much less time to train, Dr. Spetzler took great pride in beating his Barrow competition and finishing first place in his division by a margin of 40 minutes.

“It was an exhilarating event,” he says. “Ten hours on a bicycle is definitely a long time, but the adrenalin rush, the beauty of the surroundings, and the intense commitment required made it all worthwhile.”

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ashlyn dyer aquatic center Special project team working to raise funds for therapy center

by Christina Vanoverbeke team at St. Joseph’s is working to raise funds to build a new aquatic therapy center for patients at St. Joseph’s and in the community who would benefit from this valuable rehabilitative therapy.

Christina Kwasnica, MD, the team’s physician champion, says because Barrow Neurological Institute has one of the Southwest’s leading rehabilitation programs, it needs this valuable therapy resource.

“Barrow neurorehabilitation needs this pool to continue to help our patients with spinal cord injuries, traumatic brain injuries, and other illnesses and injuries,” she says. “The aquatic environment unlocks muscle spasms and allows for a feeling of weightlessness, which is both therapeutic and enjoyable.”

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The center will be named the Ashlyn Dyer Aquatic Center after a young woman who was the victim of a hit-and-run accident while running through the Presidio in San Francisco in March 2006.

After spending 10 days in the hospital on life support, Ashlyn passed away as a result of her severe traumatic brain injury. She was 27 years old.

The Dyer family lives in California and Phoenix and decided they wanted to leave some kind of legacy for Ashlyn in both places. They started the Ashlyn Dyer Foundation in California to help raise awareness about traumatic brain injury and have made a generous lead gift to Barrow Neurological Foundation’s campaign to build the Ashlyn Dyer Aquatic Center.

“Phoenix has been good to us. A lot of the money that’s been given to our foundation comes from

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Phoenix, and we want a chance to give it back,” said Ashyln’s mother, Marsha Dyer.

Marsha says that Ashlyn was an avid swimmer and that if Ashlyn had lived, she likely would have been using the pool at Barrow as part of her rehabilitation.

Therapeutic exercises performed in water can be beneficial for a variety of individuals with musculoskeletal and neuromuscular disorders. Aquaticbased therapy augments traditional land-based therapy by offering an ideal setting to initiate treatment for patients who have weight-bearing restrictions, difficulty controlling the torso, which is needed for balance, or excessive pain that is exacerbated by the pressure of body weight.

Resistance from the water during exercise provides a safe environment for addressing strengthening, movement, and postural retraining.

Clinicians at St. Joseph’s attempt to incorporate aquatic-based interventions into treatment plans for patients of all ages with a variety of diagnoses: stroke, brain injury, spinal cord injury, back pain syndromes, injuries requiring restricted lower extremity weight bearing, and other musculoskeletal dysfunction.

Why aquatic therapy?

While Barrow has a pool used for aquatic therapy, clinicians’ attempts to fully utilize these treatments are hindered by some problems with the pool: • The location of the current pool on 7th Avenue is not close to any of the rehabilitation treatment areas: the Bruce and Deborah Downey Neuro

Existing pool problems

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Rehabilitation Center, the Center for Transitional Neurorehabilitation, or Outpatient Rehabilitation.

This means patients often must board a van and be transported to and from the pool—a task that can be difficult and that wastes critical rehabilitation time.

• The design of the pool area is not conducive to sessions during the summer months because it is not enclosed, leaving patients exposed to the elements.

Therefore, the pool is utilized only a few months out of each year because of extreme temperatures.

It also may be shut down abruptly due to storms.

• Another drawback to the existing pool is that it was not designed for therapeutic use and so does not accommodate people with special needs. For example, it does not have all of the special lifts, sloped floors, or sunken ledges that would make using the pool easier for rehabilitation patients.

The Ashlyn Dyer Aquatic Center for rehabilitation services at Barrow will be tailored to fit the needs of the patients using it. Some of the planned features for the center include: • Perhaps most importantly, an enclosed and climate-controlled facility for use year round.

• Two lifts so more patients can get in and out of the pool at the same time.

• Stairs customized to suit individuals with special needs. The current pool was once a hotel pool and has short, steep stairs that are difficult to use.

• A different pool cleaning system that is safer for patients. Chlorine-based systems can be dangerous to special-needs patients because toxic fumes often collect near the water’s surface, resulting in individuals breathing them in during therapy.

• Locker rooms to allow patients and families to change on site.

The Ashlyn Dyer Aquatic Center also would serve more than the inpatients and outpatients needing neurological rehabilitation at Barrow. The new proposed location on the south side of Merrell Street could conveniently serve Children’s Rehabilitative Services, Parkinson’s patients, orthopedics patients, the Arthritis Foundation, and Ryan’s House, a palliative and hospice care facility for children.

Members of the project team include co-champions E. Jeffrey Walsh, Christina Kwasnica, MD,

Help build the new center

and Kathy Kramer; Sr. Madonna Marie Bolton, Greg Anderson, Steve Ast, Kelly J. Barr, Phil Coyle, Marsha and Bruce Dyer, Gee Gee Entz, Bill Gullekson, Christina Hall, Renee Johnson, Herman Orcutt, Tom Reahard, Guy Inzalaco, and Michelle M. Matiski.

“Aquatic therapy offers yet another dimension of care for patients with many different diagnoses,” says Kramer. “Once built, the Ashlyn Dyer Aquatic Center will offer an important component for people needing rehabilitation services. I’m so proud of the members of the committee who are dedicated to raising the money to see the project through from start to finish.”

For information about how you can contribute to this important initiative, including available naming opportunities, please call Barrow Neurological Foundation at 602406-3041 or email Kramer at Kathy.Kramer@CHW.edu. ■

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Charitable Gift Annuities: Certainty in Uncertain Times If the stock market has you down, a charitable gift annuity (CGA) may be just what the doctor ordered.

It’s a great way to get guaranteed income during retirement—while giving to a charity you care about.

Below is an example of how a charitable gift annuity works:

Pat Smith, 68

Gift of Cash to SJF or BNF $10,000

•

6% Annuity

Charitable Gift Annuity $10,000

Charitable donation to SJF/BNF $10,000 (approximate value)

•

•

Pat gives $10,000 to St. Joseph’s Foundation (SJF) or Barrow Neurological Foundation (BNF).

SJF/BNF invests the gift.

•

Pat receives a contract guaranteeing annuity payments of $600 per year for life (estimated lifetime payout is $12,660).

•

A portion of the annuity payments is tax-free.

•

Pat also gets a charitable tax deduction of $3,469.

•

Upon Pat’s death, the remaining funds in the CGA are released for use in hospital programs.

602-406-3041 • SupportStJosephs.org • SupportBarrow.org.

*This educational illustration is not professional tax or legal advice. Consult a tax advisor about your situation.

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what’s happening around barrow Foundations welcome new staff member

Julie Alvarado will enhance philanthropic giving to St. Joseph’s Hospital and Medical Center, Barrow Neurological Institute, and the Scott and Laura Eller Congenital Heart Center as the Foundations’ new director of Philanthropic Innovation.

“In this new century with new economic times, we must all be looking at ways to partner to benefit our community,” Alvarado says. “I want St. Joseph’s to lead the way in those endeavors.”

Alvarado is charged with looking at new ways of increasing and continuing unique corporate partnerships in order to better serve those in need in the community. She has 20 years of experience in corporate and community relations, which she will use to serve corporate partners in innovative ways.

Among her responsibilities are raising funds and cultivating relationships with local and regional businesses and professional sports franchises, and coordinating major events like Lou Grubb Friends Fore Golf and Celebrity Fight Night.

Alvarado received her bachelor’s degree from Arizona State University and her master’s in adult education and leadership from Ottawa. Previously, she held development and communications positions with Motorola, Arizona State University, medical equip-

ment companies, and an advertising agency. She co-founded AZMED Monitoring Solutions, a medical equipment provider.

Alvarado has led panels or projects for the Hispanic College Fund, Valley of the Sun United Way, Arizona Association for Foster and Adoptive Parents, Chandler Regional Medical Center, and other non-profit organizations. She is a graduate of Valley Leadership and was a recipient of the Phoenix Business Journal’s 40 under 40 award.

Craniofacial center has a new name and a fundraising campaign

Since opening more than 20 years ago, the Craniofacial Center at Barrow Neurological Institute has taken care of thousands of children born with complex congenital or acquired craniofacial disorders. The Center has grown into one of the nation’s largest in providing comprehensive clinical, diagnostic, surgical, educational, genetic, and support services. Patients who come to St. Joseph’s do not graduate from the Center’s program, but instead receive a lifetime care commitment.

A campaign is underway to raise $1.1 million to expand and update the Center’s space and services,

reducing wait times for families and enabling core services to be consolidated in one location.

To more accurately represent its core patient population, the Center has been renamed the Barrow Children’s Cleft & Craniofacial Center.

For information on how you can contribute to the Barrow Children’s Cleft & Craniofacial Center, call the Foundation Office at 602-406-3041 or email Robert.Hopkins@chw.edu.

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benefactor briefs The Leona M. and Harry B. Helmsley Charitable Trust

The Leona M. and Harry B. Helmsley Charitable Trust has awarded a $1-million grant to Barrow Neurological Foundation (BNF) for the construction and equipping of a research facility at Barrow Neurological Institute. The facility, which includes a wet lab and a cutting-edge 7 Tesla magnetic resonance imaging (MRI) unit, will be used for collaborative research between Arizona State University and Barrow in the areas of neuroimaging, neurorehabilitation, neural engineering, motor control, movement disorders, brain and spinal cord trauma, cancer, and neuroprotection.

“This generous grant is especially significant, given the downturn in the economy,” says Mary Jane Crist, CEO of BNF. “It supports a facility that will make the latest imaging technology available to scientists throughout our community.”

The grant to BNF is part of about $136 million in grants recently announced by the trustees of The Leona M. and Harry B. Helmsley Charitable Trust to charita-

ble organizations in the U.S. and elsewhere. It is the first round of grants from the Trust since Mrs. Helmsley’s death in August 2007. The Trust is administered by five trustees selected by Mrs. Helmsley.

In a statement accompanying the announcement of the grants, the trustees said, “We are continuing the philanthropic legacy of Mr. and Mrs. Helmsley. Throughout their lives, the Helmsleys were committed to helping others, through the innovations of medical research, responding to those in need during critical times, and in other areas. We now have the privilege of continuing their good works by providing support where it will make a difference.”

The Trust is supporting a diverse range of organizations, with a major focus on health and medical research. In addition, the Trust is supporting programs in human services, education, and conservation. The complete list of grant recipients is available at www.helmsleytrust.org.

The Parkinson Network of Arizona

The Parkinson Network of Arizona (PNA) recently donated $15,000 to the Muhammad Ali Parkinson Center to support the Center’s programs and services.

PNAbegan more than three years ago when a small group of individuals whose lives were somehow touched by the Center came together to think about ways that they could help.“This is such a wonderful place for the improvement of people with Parkinson’s,” says past president and member John Yonushonis.

The group has held five events that have generated $106,000 in donations to the Center and two support groups associated with the Center.

Abraham Lieberman, MD, director of the Center, says he is grateful for the group’s support. “We’re very honored to be receiving this money. And I think we’re worthy of receiving it. We’ve had 3,600 patient visits in the last year. We have 40 to 60 new patients a month, and they’re coming from all over—Colorado, Wyoming, Utah, California, Mexico.”

The group organizes two major fundraisers each year—a jazz festival and a walk-a-thon. They raised $5,000 their first year, $10,000 the next, and $15,000 this year. PNA president Jack Goldwater says they hope to attract 1,000 walkers to their next walk-a-thon. “We’re basically a fundraising committee and an awareness committee for the Center.”

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John and Ann Yonushonis

Your participation in the Health & Wealth Raffle has helped create winners all over Arizona. In the past six years, more than 114,000 prizes have been awarded to Raffle participants, including cash, homes, trips, cars and so much more.

But the real winners are the patients of St. Joseph’s Hospital and Barrow Neurological Institute and everyone in Arizona who has benefitted from the life-saving patient care, medical research and medical education that has received funds from the Health & Wealth Raffle.

TO VIEW A COMPLETE LIST OF WINNERS, GO TO HEALTHWEALTHRAFFLE.ORG

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U P D A T E

research update Neurosurgeon presents findings from Marguerite Clark Hobbs Ruptured Aneurysm Trial

Cameron McDougall, MD, an endovascular neurosurgeon at Barrow, presented findings from the Marguerite Clark Hobbs Ruptured Aneurysm Trial at the annual meeting of the American Association of Neurological Surgeons (AANS) in September 2008. The trial, now in its fifth year at Barrow, has been designed to determine whether traditional surgical clipping or newer endovascular approaches are superior in the treatment of ruptured cerebral aneurysms. Dr. McDougall and Robert Spetzler, MD, are co-principal investigators of the study.

The Marguerite Clark Hobbs Ruptured Aneurysm Trial met its enrollment goal of 500 consented patients in January 2007. Each patient was randomly assigned to one of two treatments: surgical clipping or endovascular treatment. The study is examining clinical and angiographic outcomes of the enrolled patients, as well as the quality of life and economic impact outcomes of the two treatments. Six-month and one-year follow-up visits have been completed, and three-year follow-up visits should be completed by December 2009.

Nancy and Lee Hanley have been major supporters of the trial since it began at Barrow. The couple’s generous donations to aneurysm research at Barrow honor Nancy’s mother, Marguerite Clark Hobbs, who died in 1979 of a ruptured aneurysm.

Their goal is to prevent other people from suffering trauma and loss from Nancy and Lee Hanley ruptured aneurysms.

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Forecasting the future of brain tumor treatment

Researchers and students from St. Joseph’s Hospital and Arizona State University’s Math Department are applying weather forecast technology to model and track the growth patterns of brain tumors.

The technology allows researchers to study various growth patterns of brain tumors and apply treatment parameters to determine the best option for patients.

It will forecast how a patient’s tumor may grow with different treatment scenarios, help physicians make a much more informed prognosis, and be used as a patient counseling tool.

The research study began when Barrow and ASU researchers used data from a collection of normal brain images to create a life-like recreation of the brain.

They positioned a virtual tumor in the brain image and applied intricate math formulas used in weather forecast technology to predict how the tumor would grow.

Once the virtual tumor began to grow, the researchers resected part of the tumor and gave it the effects of radiation and chemotherapy to see how the tumor would respond. A patient study was eventually used to compare the tumor growth and outcome between the patient and the virtual model. They closely matched.

“This study has resulted in the most accurate and life-like recreation of the growth of malignant brain tumors,” says Mark Preul, MD, Newsome Chair of Neurosurgery Research at Barrow. “The technology used in the study could pave the way for better treatment plans enabling improved outcomes for patients.”

The study will be published in Cell Proliferation and is the basis for a National Science Foundation grant submission. Barrow Neurological Foundation funded the initial study.

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Where’s Waldo?

Researchers discover how we find him

With assistance from the classic book character Waldo of Where’s Waldo? fame, researchers at Barrow have recently made a major advance in understanding how the brain searches for objects of interest.

Susana Martinez-Conde, PhD, and fellow researchers Stephen Macknik, PhD; Jorge Otero-Millan; Xoana Troncoso, PhD; and Ignacio Serrano-Pedraza, PhD, recently conducted a study asking participants to find Waldo. As participants searched, their eye movements were simultaneously recorded. Results showed that the rate of microsaccades—tiny, jerk-like fixational eye movements—dramatically increased when participants found Waldo.

“This discovery helps explain human searching behavior, which can assist us in finding keys on a cluttered desk or recognizing a child’s face on a playground,” says Dr. Martinez-Conde.

The central role of microsaccades in visual perception has been a highly debated topic among researchers for decades. The results from the Martinez-Conde lab, which receives funding from Barrow Neurological Foundation, may help explain the correlation between microsaccades and search behavior, both in the normal brain and in brains with visual or eye-movement deficits.

“We now know there is a direct link between microsaccades and how we search for objects of interest,” says Dr. Martinez-Conde. “This link can help with future advancements such as creating neural prosthetics for patients with brain damage or machines that can see as well as humans.”

Susana Martinez-Conde, PhD, and Stephen Macknik, PhD

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S S B T R

by Christina Vanoverbeke

SSBTR Student fundraisers visit Barrow to learn about brain tumor surgery group of civic-minded teenagers is raising awareness and money to help researchers learn more about brain tumors. In return, they are gaining knowledge about the brain and how it functions from the staff at Barrow Neurological Institute.

Students Supporting Brain Tumor Research (SSBTR) sponsored its 8th annual walk-a-thon at Pinnacle Peak High School in Phoenix on March 7 to raise funds for brain tumor research.

SSBTR is a student-run organization founded in 2001. Each year, students in Arizona plan the annual walk-a-thon and donate the money raised to support research at various institutions, including Barrow. This year, a walk-a-thon also was held in Tucson.

The group raised $215,000 during this year’s event and reached a fundraising milestone of $1 million since beginning the walk-a-thon. Barrow Neurological Foundation is one of the major beneficiaries of this fundraising event and received $55,500 from this year’s walk-a-thon. Since 2004, Barrow has received more than $225,000 from SSBTR. Barrow uses 100 percent of the money donated from SSBTR for bench (laboratory) research and translational (spanning the lab to the clinic) research, all designed to determine both the cause of and a cure for brain tumors.

This work is done in the Neuro-Oncology Research Laboratory at Barrow's Ina Levine Brain Tumor Center

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where the goal is to understand the underlying genetic mechanisms that enable some brain tumors to survive cancer therapy. This laboratory is defining the genes responsible for resistance to currently available therapies, including chemotherapy and radiation.

About one month before this year’s event, approximately 30 SSBTR members visited Barrow to observe a brain tumor surgery via live, closed-circuit television.

The students observed the removal of a meningioma, a tumor that forms in the meninges, the area between the skull and the brain, and that is usually benign. Typically, meningiomas occur in people ages 40 to 60. They are twice as common in women as in men.

The surgical observation gave the SSBTR students an opportunity to see how their contributions help brain tumor patients. Brain tumors are the leading cause of solid-tumor cancer deaths among teenagers.

Amy Lindsey, a senior at Pinnacle Peak High School who is interested in a medical research career, said the observation was a unique opportunity for her to learn more about a subject she is very interested in. “I was very excited,” she said. “I’ve never seen a surgery before.”

Steve Glassman, who is a student government advisor at Pinnacle Peak High School, established SSBTR after a friend of his from his home state of Massachusetts became involved with the Brain Tumor Society. Glassman had been looking for something that would get his students to become more civic-minded.

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“It’s a great cause,” he says. “It gets the students involved in community service, and it raises money to stop students from dying.”

There are now more than 100 schools involved in SSBTR, and the annual walk is by far the biggest event.

“It’s beyond my wildest dreams how much it has grown,” Glassman says. ■

“I was very excited. I’ve never seen a surgery before.”

Amy Lindsey

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G I V I N G

estate planning Make sure your legacy has a voice

by Kathy Kramer Vice President, Leadership Gifts

very year the vast majority of Americans who die do so without having prepared a valid Last Will and Testament.

For the past three decades, the numbers have hovered between 70 and 80 percent.

This statistic is especially astounding since state and federal laws provide some significant incentives for the preparation of a will. These incentives are designed to make it easy for very personal wishes to be known and followed—wishes that deal with child custody, property distribution, and a legacy of values. Not to mention the fact that, in many cases, a carefully planned will serves to actually minimize costs related to settling an estate.

What is it about the preparation of one’s personal wishes—the purpose of the Last Will and Testament— that Americans avoid in such resounding numbers?

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In many instances, a carefully prepared will does have some attendant costs. This is especially true where complicated or larger estates are involved.

However, a few hundred dollars—or even more when necessary—pale in comparison to the cost of having no will at all. Without a will, an estate may face the maximum in applicable probate costs and taxes. In the event of any family disagreement over distribution, legal costs skyrocket. By the time settlement occurs, hundreds or even thousands of dollars might have been lost. In some cases, heirs can actually end up bearing the brunt of out-of-pocket costs. Having a will could even save you and your family money.

A will is costly

Many Americans seem to have a built-in distaste, even distrust, for legal documents. They tend to be long and difficult to understand. A will is easily understood, however, when compared to the legal intrica-

Distaste for legal documents

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cies that an estate without a will may experience.

Attorneys will gladly provide an easy-to-understand summary of the contents of a will to ensure that your objectives are met.

It is easy for many Americans to look around and feel their estate is small and does not warrant the time and expense of a will.

After all, the headlines always highlight multimillion-dollar estates. The truth is that every day many people die possessing much more than they realize.

What may be a modest home today, a small investment portfolio, or just the beginning of a savings account can enjoy significant growth in value before death. Where no will exists, the state will determine distribution.

Too little property to merit a will

Finally, it is completely possible that the single biggest reason Americans fail to prepare a will falls into the “life just gets in the way” category. For some, it is simply the day-in-day-out routine that prohibits them from considering a will. For others, it is the reality that no one plans to die, or certainly, no one enjoys planning to die. For another group, it may be rationalized under the “no one can know the future” reason, thinking that so much could change between today and the time of death. What good could it do to plan today?

Life gets in the way

Please consider planning your legacy today

Call my office at 602-406-3041 today for a free Will Planning booklet. Then consult with an attorney to draft your will. Your will is your opportunity to articulate your wishes, your values, and your legacy. ■

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