MOVING TOWARD A WORLD FREE OF MS July-August 2008
Volume 21 • Issue 4
Minnesota Chapter
Chapter takes on dramatic drug co-pay increases “Last year, with the increase in the cost of my medication, I was forced to sell my home — lose the independence I have worked so hard for all of my adult life … I find I want to give up the fight and let the MS win and have even considered not taking my shots to save the $200 per month.” –Sandy McCline, Elko, Minn.
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n the past one to two years, people with multiple sclerosis insured through employer-based health plans have faced significant challenges in paying for MS disease-modifying drugs. Several area health plans have increased co-payments for MS prescription drugs from $25 for a three-month supply to $200 for a one-month supply.
INSIDE THIS ISSUE:
This disturbing trend has caused financial strain for many people with the disease. For some, it has forced them to make drastic
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decisions about whether to pay mortgages, college tuition, utility bills and other living expenses or pay for treatment. The National MS Society, Minnesota Chapter is working to address this important issue affecting quality of life for Minnesotans living continued on Page 14
News Page 6
Giving Page 11
Can you help us? 612-335-7900 / 800-582-5296 Publication of the National Multiple Sclerosis Society, Minnesota Chapter 200 12th Ave. S. Minneapolis, MN 55415
Office supplies
Other supplies
n 1-inch binders
n 5 megapixal or greater
digital cameras
Chair Karen Larson
n address labels (1 inch
Chapter President Maureen Reeder
n banker boxes
Newsletter Editor Emily Wilson
n CD jewel cases
n gallon Ziploc® bags
n copy paper (various
n gift baskets for men
E-mail editor@mssociety.org Information provided by the society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. Sponsorship of society programs or events does not connote that the National Multiple Sclerosis Society recognizes superiority in products or services provided by the sponsoring entity over other entities providing like or similar products or services. To obtain an audio tape of MS Connection, call Timothy Holtz at the Minnesota Chapter. © 2008 National Multiple Sclerosis Society, Minnesota Chapter
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The Minnesota Chapter is always looking for in-kind donations. If you are able to donate any items on the list below, please call the chapter.
JOIN THE MOVEMENT: nationalMSsociety.org
by 2 5/8 inch) n CDs and DVDs
sizes, colors needed) n envelopes (various
sizes needed) n file folders (regular
and hanging)
n duct tape n first aid supplies (call
for details)
n pop-up tents n sharp kitchen knives n restaurant/store gift
certificates and other prizes
n large three-ring
binders n name badge labels n notebooks n pocket folders n white boards
Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms. If you or someone you know has MS, please contact the society at www.nationalmssociety.org or 1-800-582-5296 to learn more.
Note from the board The unlikely activist in all of us
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don’t believe that people are born to be activists or that activism requires a certain talent or skill set. Karen Larson I think, rather, that people Board Chair become activists when they come across something so wrong and unfair, that it drives them to do something about it. The passion to make change is what ignites the unlikely activist in all of us. I knew from an early age that something needed to be done about multiple sclerosis. Watching my mother endure the everyday struggles of the disease throughout her life made me passionate about making life better not only for my mother, but all people living with the disease. If my family had not been touched by MS, I may not have found the passion to serve the Minnesota Chapter as chair of the board of trustees. In my role as board chair, I help guide the chapter to ensure the needs of people
affected by MS are met and we do what we can to help fund cutting-edge research to find better treatments and ultimately, a cure. That’s how I became an unlikely activist. Each of us has our own story of what brought us here. And each of us is an activist in our own way. Whether you live with MS yourself, have a family member, friend or co-worker affected by the disease, or just want to do something about MS now, it’s the desire to fuel change that binds us together and makes activism spread like wildfire. Maybe you meet with your state legislators to advocate on MS issues, petition your city council to make accessible accommodations to a building in your community, blog about how MS has affected you, or rally your friends and family together for a Walk MS or Bike MS event. Whatever you do, it counts. And without each and every activist, we would not be nearly as close to a world free of MS as we are today.
Be an MS activist n Visit the Minnesota Chapter Web site and sign up to be an Action Alert
member. You will receive monthly updates along with timely notices about impending votes or actions being taken on MS issues. n A first ever activist training will be held at the MS Annual Convention Nov. 21
in Minneapolis. Learn strategies and tactics for advocating in your community. n Attend the 2009 Capitol Conference and talk with your legislators about
prescription drug co-payments and the caregiver tax credit. n Sign the Caregiver Tax Credit petition at www.MSsociety.org.
TOLL FREE NUMBER 800 582 5296
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NEWS BRIEFS
Still time to file, receive tax rebate This May the Internal Revenue Service began sending out “economic stimulus” rebates to everyone who filed a 2007 federal tax return form. People on Social Security, disabled veterans and people who have incomes of $3,000 or more a year will receive $300 for individuals or $600 for couples, even if they haven’t filed before. While the tax filing deadline was
April 15, there is no penalty for filing late if you do not owe anything. File by Oct. 15, 2008. People who do not file will not receive a check.
GET INVOLVED Visit www.irs.gov or call 800-829-3676 for more information and a copy of the form.
Bike MS series kicks off in Maplewood The Minnesota Chapter’s 2008 Bike MS series kicked off Saturday, May 10, with the Allianz Twin Cities Ride in Maplewood, Minn. Cyclists chose a 30- or 60-mile route featuring the Gateway Trail that started and ended at the Maplewood Community Center. The second Bike MS ride, the Larkin Hoffman MS 150, was held June 6 to 8 and raised more than $2.6 million to help end multiple sclerosis. Cyclists near the finish line of this year’s Bike MS: Allianz Twin Cities Ride May 10.
Legislators take action to support accessible transit A large transportation policy bill that includes improvements in transit planning and services for people with disabilities passed the Minnesota House and Senate. The National MS Society, Minnesota Chapter, along with the Minnesota Consortium for Citizens with Disabilities, introduced a bill calling for enhanced transit planning for people with disabilities. More than 130 MS activists advocated on this issue at the Capitol Conference in March. 4
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Barbara Marsh (pictured here), who lives with MS, testified at a Senate Transportation Committee hearing this March to support improvements to accessible transit.
This May 80 campers and 35 volunteers participated in 2008’s first MS Camp at Camp Courage in Maple Lake, Minn. MS Camp is a weeklong recreational program that gives adults living with MS a chance to connect with others affected by the disease and enjoy a wide array of activities including pontoon boating, horseback riding, cooking, arts and crafts and more. Campers also took advantage of new camp activities such as an instructional course about how to tell your personal story through writing, blowdarts and more. The second MS Camp will be held Aug. 17 to 22.
NEWS BRIEFS
Campers enjoy first MS Camp of 2008
Campers pose with handmade birdhouses during an activity at MS Camp this May.
Edberg elected to chapter board Dr. Dale D. Edberg of Rochester, Minn., was recently elected to the National MS Society, Minnesota Chapter Board of Trustees. After he was diagnosed with multiple sclerosis in Dr. Dale D. Edberg 1994, Edberg wanted to help others living with the disease and pursued a career in the field of MS research. Edberg now works as a research fellow in the Department of Neuroimmunology at the Mayo Clinic College of Medicine in Rochester, Minn.
Since 2005, Edberg has volunteered at Walk MS: Christopher & Banks Rochester Walk and has presented information about MS research to people affected by MS at society programs, self-help group meetings and state and national conventions. Edberg also served on the chapter’s research committee. Edberg received a Bachelor of Science degree in biochemistry and Bachelor of Arts degree in chemistry and psychology at the University of Minnesota-Duluth. He earned his doctorate in biochemistry at Washington State University in Pullman, Wash.
TOLL FREE NUMBER 800 582 5296
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NEWS
2008 convention to highlight importance of storytelling
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ultiple sclerosis is an unpredictable disease that affects no two people in the exact the same way. Each person touched by MS has his or her own unique story. Sharing the infinite stories of MS helps to raise awareness and educate people in our communities, engage others in the movement to end MS, and provide hope and support to people living with the disease and their care partners, families and friends. When told, each story holds the potential to foster relationships and inspire movement, which is why this year’s MS Annual Convention — Nov. 21 to 23 at the Hyatt Regency Hotel in Minneapolis — will highlight the importance of storytelling. Throughout the weekend, convention attendees will hear stories from people affected by MS in the Minnesota Chapter area through a series of videos. In the videos, people with MS and their loved ones will share their personal experiences with MS including their fears and joys, how they cope and how they move forward. The convention will also showcase the five winning films of last year’s Moving Forward Film Festival. The short films, by and about five people affected by MS, show that life with MS can be bold, meaningful and inspirational.
The 2008 convention will showcase several keynote speakers including Minnesota’s own Laurie Lindeen — frontwoman for the 90s rock band Zuzu’s Petals. After she was diagnosed with MS in Laurie Lindeen her 20s, Lindeen wanted to live life to the fullest, which led her to tour the country as guitarist and songwriter for the all-female punk trio. Lindeen, now a mother and author, accounts her unique story in the memoir “Petal Pushers: A Rock ‘n’ Roll Cinderella Story.” National MS Society Board Chairman Weyman T. Johnson, Jr., Esq., will also speak at this year’s event. Before taking the gavel of society leadership in 2005, Johnson served as chair of the Georgia Chapter Weyman T. from 1990 to 1994 and Johnson, Jr., Esq. joined the national board in 1995. Johnson has a personal stake in the MS movement. He and his sister live with MS, and Johnson’s father and aunt, both now deceased, lived with the disease.
Grant Watkins
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The third annual Care Partner Appreciation Dinner Friday, Nov. 21, will feature Grant Watkins, inspirational speaker and author of “CPR
NEWS Also at the convention, Dr. Gary Birnbaum of the MS Treatment and Research Center at the Minneapolis Clinic of Neurology will discuss the latest in MS research.
for Caregivers: Connect, Project & Reflect.” Watkins began his 20 plus years of caregiving and working with seniors at the age of 17 when his father was declared legally blind due to complications with diabetes.
Fred Kusch
Fred Kusch, president of the international consulting firm JFK Associates, Inc., whose philosophies, innovation and personal approach have inspired audiences around the world, will speak about why each person’s story matters.
Dr. Gary Birnbaum
LEARN MORE For information about the 2008 MS Annual Convention, visit www.MSsociety.org.
Volunteers needed to counsel Medicare beneficiaries
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he Linking Individuals in Need of Care and Services program — or LINCS — seeks volunteers to counsel Medicare beneficiaries by phone from their own home. LINCS volunteers will assist people living with multiple sclerosis and others who rely on Medicare by helping them identify eligible programs, navigate the application process, and find affordable health care options. This program affords opportunities to learn about Medicare and the health care system, build your resume, and have the satisfaction of helping others be self advocates. Volunteer counselors work with clients through the entire process, from identifying the programs for which they are eligible, to filling out the application
and following up to ensure they received the help they need. Counselors must be able to be on the phone and computer at the same time. LINCS is a program of the Medicare Rights Center, which was established in 1989 to help older adults and people with disabilities get good, affordable health care. If you are interested in volunteering for LINCS, please complete an application at www.medicarerights.org/lincs.html. For more information about LINCS, please contact program coordinators Rachel at 212-204-6273, or Iris at 212-204-6218, or e-mail LINCS@medicarerights.org.
TOLL FREE NUMBER 800 582 5296
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CORPORATE SPOTLIGHT
Sneak peak at the MS Annual Convention Exhibit Hall The Minnesota Chapter’s 2008 MS Annual Convention Exhibit Hall will feature nearly 70 vendors showcasing products and services to help people living with multiple sclerosis. This year, the Exhibit Hall provides more hours of uninterrupted viewing time from 5 p.m. Friday, Nov. 21, to 6 p.m. Saturday, Nov. 22. Vendors will include top sponsors for the 2008 convention — EMD Serono/Pfizer, Biogen Idec, Teva Neuroscience, Bayer HealthCare Pharmaceutical and Walgreens Specialty Pharmacy — as well as many other companies.
2008 Exhibit Hall sneak preview: ACCUA Advanced Training ACCUA is a fitness and wellness facility for people of all ages and abilities. At the center of the company is a Hydro Worx therapy and sport training pool featuring an in-water motorized treadmill. Visit www.accua.net.
Bridge Medical Bridge Medical is an industry innovator in the design and manufacturing of home medical equipment and solutions. Its patented Portable Grab Bars are the strongest and most effective solutions in portable safety on the market today. To learn more, visit www.bridge-medical.com.
Levo USA
A 2007 MS Annual Convention attendee visits with an Exhibit Hall vendor.
GET INVOLVED To learn more about becoming an Exhibit Hall vendor, contact Kari Harju at 612-335-7968 or kharju@mssociety.org. To learn more about MS Annual Convention sponsorship opportunities, contact Teri Cannon at 612-335-7925 or tcannon@mssociety.org.
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Levo USA combines Swiss engineering with U.S.-based service and support to provide stand-up wheelchairs available in manually-propelled, powered-standing or as a fully-powered model. To learn more, visit www.levousa.com.
Provision Associates Provision Associates products include the Easystand standing frame by Altimate Medical, Leisure Lift scooters and power chairs, Maddak aids to daily living and the Logic Mark emergency telephone system. Visit www.provisionassociates.com.
Renaissance Exteriors Renaissance Exteriors offers luxury baths, easy walk-in tubs and wheelchair accessible showers done in 24 hours. Visit www.homebetterment.com.
“I felt that charging a higher rate was discrimination against people in wheelchairs.” – David Wexler
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eople living with multiple sclerosis can face many challenges aside from the disease itself, which is where activism comes into play. Activists work to find solutions to MS issues. Whether it’s advocating for disability rights, access to quality health care or affordable insurance, MS activism comes in all shapes and sizes.
Wexler filed a complaint with the Minnesota Department of David Wexler pictured with Human Rights, one of Airport-Town Taxi’s who in turn wheelchair accessible vans. filed a charge of discrimination against the company on Wexler’s behalf.
In April 2007 David Wexler took a taxicab to meet his wife, Jackie, at a restaurant less than three miles from their Minnetonka home. Wexler, who uses a motorized wheelchair, reserved the ride through Airport-Town Taxi — a metro area transportation company with wheelchair accessible vans that offers on-demand service.
In response to the charge, Airport-Town Taxi said the higher minimum fare is necessary to offset the additional costs required to provide the service. The company offered several cost-related factors including the high cost of purchasing and maintaining the rear-entry vehicles, additional time for pick-ups and drop-offs for passengers in wheelchairs, special training required for all drivers operating wheelchair accessible vans, and the economics associated with its independent contractor drivers.
The driver was on-time, polite and properly trained on how to secure passengers in the vehicle. But when the driver asked for a $20 fare, Wexler was dismayed. The meter read only $8.58. Wexler inquired about the high fare, and the driver said all wheelchair accessible rides require a $20 minimum fare because of higher insurance costs and mandatory training for drivers. Wexler thought this was unfair and took action. “I felt that charging a higher rate was discrimination against people in wheelchairs,” he said. “I believed this to be a violation of the Minnesota Human Rights Act.”
I JOINED THE MOVEMENT
A story of an unlikely activist
As a result of Wexler’s complaint, AirportTown Taxi agreed to discontinue the $20 minimum fare for passengers in wheelchairs or scooters, and are only charging the metered fare. In the meantime, Wexler said “Activism works!” and continues to look for new ways to be an MS activist for all people affected by the disease.
TOLL FREE NUMBER 800 582 5296
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ADVOCACY VOLUNTEERS
Volunteer returns for fifth year on Challenge Walk MS Crew Plecko said volunteering is therapeutic for him because it helps build hope of striving toward a cure, and adds that Crew provides opportunities to meet many people and develop friendships. But what Plecko enjoys most about the Crew experience is seeing everyone join together and promote awareness to raise money and find a cure for MS. Justin Plecko (left) and his brother Jeremy (right) during the candlelight ceremony at Challenge Walk MS: Twin Cities 2007.
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his September will mark Justin Plecko’s fifth year as a Crew member for Challenge Walk MS: Twin Cities. Plecko’s drive to volunteer stems from his personal experience with multiple sclerosis. His mother, who participates in the three-day, 50-mile walk, lives with MS. Crew is a group of dedicated volunteers who work throughout the entire three-day event to ensure things run smoothly, which includes helping with set-up, registration and route maintenance, keeping walkers hydrated, fed and motivated and much more. Challenge Walk MS has become a family experience, with Plecko’s father, brother, girlfriend and grandparents all participating. During Challenge Walk MS, Plecko helps administer first aid at rest stops. As an athletic trainer, he enjoys helping others and ensuring walkers have a safe, healthy and enjoyable experience. Working at rest stops also provides Plecko an opportunity to have interesting conversations and interactions with walkers.
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Plecko offers this advice to fellow volunteers and anyone considering becoming a volunteer: “Provide whatever time or skills you have. Just a day or a couple of hours makes a difference,” he said. Written by Christina Wrightsman, an intern in the volunteer department. Wrightsman is a recent graduate of St. Cloud State University and plans to attend William Mitchell College of Law this fall.
LEARN MORE To learn about Challenge Walk MS Crew, contact Will Ziegenhagen at 612-335-7992 or wzeigenhagen@MSsociety.org.
Volunteer opportunities Aug. 16-22, MS Camp A weeklong program for adults living with MS in Maple Lake, Minn. Nurses and cabin assistants needed. July 20-25, Bike MS: Star Tribune TRAM Ride Volunteers needed along the route each day and at the finish line in Duluth. Sept. 12-14, Challenge Walk MS: Twin Cities Three-day walk in the Twin Cities. Crew member and other volunteer opportunities available.
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ultiple sclerosis affects women two to three times more than men. Pregnancy tends to reduce the symptoms of the disease. A new Minnesota Chapter education campaign investigates these and other unique differences between men and women living with MS. “Why Women?” explores the exciting area of gender-related MS research and shares stories of women living with the disease. Katy Hunchis Holden is one of nine women who shares her story and advice as part of the new campaign. For nearly 10 years Hunchis Holden has managed the unpredictability of MS and believes that since you can’t get rid of the disease, you have to stand up to it.
and dedicates her time to speak at Women Against MS luncheons across the country. The success of the luncheon depends on our volunteer table hosts. Table hosts invite nine friends, colleagues Katy Hunchis or associates to be their Holden guests and sit with them at the luncheon. At the conclusion of the program, each person attending is invited to contribute to the MS movement. “There is a really vibrant and energetic feel at the luncheon, and I’m impressed by the variety of people drawn to event,” she said. “It’s not just for women — there are more and more men who attend.”
Hunchis Holden stands up to the challenges of MS by maintaining a positive outlook and staying active. She rides and shows horses, plays mandolin and helps plan the chapter’s Women Against MS luncheon. This is Hunchis Holden’s third year on the planning committee — an activity she said is stimulating and exciting.
Hunchis Holden — and other women from the “Why Women?” campaign — will be featured at the luncheon. Attendees can read stories and watch interviews with the women, learn about current gender-related MS research, nominate a strong woman and more at the “Why Women?” display.
“It’s inspiring to work with successful committee members who have the courage to talk about MS and engage sponsors,” Hunchis Holden said.
“This campaign really opens up women’s minds and hearts and gives others a peek into the challenges women face each day,” Hunchis Holden said.
Women Against MS is a benefit luncheon with an inspirational speaker, auctions and excellent networking opportunities. This year’s keynote speaker is Sue Thomas, nationally recognized speaker and bestselling author of the autobiography “Silent Night.” Sue was diagnosed with MS at age 51
GIVING
Volunteer shares her story as part of chapter’s “Why Women?” campaign
LEARN MORE To learn more about the “Why Women?” campaign and Women Against MS, visit www.MSsociety.org. TOLL FREE NUMBER 800 582 5296 11
RESEARCH
Progress on MS therapies, and more, reported at annual neurology meeting
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ore than 10,000 researchers and neurologists attended the 60th Annual Meeting of the American Academy of Neurology this April. Highlights in multiple sclerosis research include:
Experimental agents under study A previously reported six-month, phase 2 controlled study of oral Fingolimod showed possible benefits in relapse rate and MRIdetected disease activity in relapsing MS, and the drug is now being tested in a larger, phase 3 trial. Results show 73 percent of patients who began the study remained free from relapses after three years, and 68 percent of those who began the study remained relapse free. Researchers from the University of Texas Southwestern Medical Center in Dallas reported on a study of botulinum toxin type A injections in 19 people with MS and spastic foot drop. Botulinum toxins are powerful neurotoxins that block the release of acetylcholine at the junction of nerves and muscles, a chemical that signals muscles to contract. In clinical trials these injections have been shown to relieve spasticity in individual muscles for up to three months, without any significant side effects.
Studies of approved MS drugs The latest safety data on Tysabri revealed that 26,000 patients are now on Tysabri worldwide, and 9,900 have been exposed to the drug for at least one year, and 3,600 exposed for at least 18 months. No new cases of progressive multifocal leukoencephalopathy (PML) have occurred. 12 JOIN THE MOVEMENT: nationalMSsociety.org
Copaxone® was shown to significantly reduce the risk of developing MS and delay the development of MS in individuals with clinically isolated syndrome (CIS), a first event suggestive of MS. In the PreCISe study, 481 people with CIS with lesions typical of MS received either Copaxone® or inactive placebo. The Copaxone® group’s risk of developing clinically definite MS was reduced by 45 percent versus placebo. Researchers from the State University of New York in Buffalo reported that people with MS who have good clinical responses to treatment demonstrate a different pattern of gene expression responses compared with those who experienced only a partial therapeutic effect. These results show promise in the possibility to determine early in the treatment course whether a person will respond to therapy.
Research on tracking and understanding MS Researchers from the University of Pennsylvania, Philadelphia, presented results on using optical coherence tomography (OCT), which measures thickness of the nerve layer at the back of the eye. Study results show that using OCT for optic disc measurements as well as retinal nerve fiber layer may help to identify eyes most at risk for nerve fiber loss. Little is known about the cause of MS-related fatigue, but researchers from the Cleveland Clinic Foundation used “functional MRI” technology to evaluate the level of activation of various parts of the brain during a motor task and found that higher levels of MS fatigue correlated with a lower level of activation of the brain’s thalamus region. This begins to help scientists better understand fatigue in MS and may eventually lead to improved treatments.
RESEARCH
Research pipeline
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esearchers recently discovered an antibody responsible for neuromyelitis optica, also known as Devic’s disease, a severe MS-like condition that leads to inflammation of the optic Dr. Brian and spinal nerves. Dr. Brian Weinshenker Weinshenker, professor of neurology and researcher at the Mayo Clinic in Rochester, Minn., is leading a team of investigators who are learning important things about this antibody and demyelinating diseases such as MS. In an interview with the Minnesota Chapter, Weinshenker explains Devic’s disease, current investigations and future directions of this research.
What is neuromyelitis optica? Neuromyelitis optica (NMO), or Devic’s disease, was once thought to be a severe form of MS. However, Dr. Vanda Lennon and other colleagues at Mayo Clinic have developed a test to distinguish Devic’s disease from MS.
What kind of test is used to diagnose neuromyelitis optica? We discovered a unique antibody pattern in patients with NMO. The majority of patients with NMO have antibodies detectable in their blood that target a protein called aquaporin-4. A test called NMO-IgG detects this antibody.
Is it possible that people have been wrongly diagnosed with MS when they actually have NMO? Yes. Some people who experience transverse myelitis are mistaken for having MS but
actually have neuromyelitis, despite lack of eye symptoms. Since traditional MS treatments are not effective for people with NMO, this test will help us identify and treat NMO more effectively.
Who tends to develop NMO? Most neuromyelitis cases occur in the same groups which MS occurs, including women and people of European descent. However, we are learning that a relatively high percentage of Native Americans, who are resistant to typical MS, get this illness. We are hoping to collaborate with other organizations to research this issue further.
What are you currently researching? We are analyzing the entire aquaporin-4 gene to find mutations. We believe there may be a mutation that changes the protein and makes it damaging to the nervous system. These mutations will also help us determine why certain individuals react to the gene. We are also investigating whether there is a genetic predisposition to NMO.
Why did you get into this research? Neuromyelitis optica became a pet project of mine ever since I worked with my first patient who had it. The discovery of this antibody has given us unique insight into defining and diagnosing an MS-like disease. It’s like a door has opened up.
What do you do outside the lab? I have four kids that keep me busy and most of my activities are based around them. I also enjoy gardening and biking in my free time. TOLL FREE NUMBER 800 582 5296 13
ADVOCACY
continued from Page 1
Caregiver tax credit remains a priority
with MS. In March the chapter introduced House File 4069 in the Minnesota Legislature, a bill that would cap co-payments at no more than $50 per month for the MS disease-modifying prescription drugs. The bill is authored by Rep. Rod Hamilton, a state legislator who lives with MS.
Another priority for the chapter’s 2009 legislative agenda is the Family Caregiver Tax Credit — legislation providing a tax credit to people who care for individuals with disabilities and/or seniors requiring assistance who are otherwise at risk of entering a skilled nursing facility. Not only would this tax credit provide an incentive for informal caregivers (up to $200 per month, $2,400 per year) to curtail their use of public programs, but would also allow families and loved ones to remain together in the community. Click on Advocacy at www.MSsociety.org and sign the Caregiver Tax Credit petition.
Making headway with the health plans
NEWS
While House File 4069 did not pass during the 2008 session, the legislation caught the attention of the Minnesota-based health plans that have significantly increased their co-payments. This spring Hamilton and chapter representatives met with the Minnesota Council on Health Plans to discuss the need to reduce high out-of-pocket costs faced by people with MS. Health plan representatives agreed to review the issue and meet again this summer. If these discussions prove unsuccessful, the chapter intends to re-introduce the bill next session.
LEARN MORE See Page 3 for ways to become an MS activist. Visit www.MSsociety.org and click on Advocacy to learn more.
Accessible, affordable apartments available this fall
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he Minnesota Chapter actively partners with organizations that provide accessible, appropriate housing options designed to help people with multiple sclerosis live independently in the community. This fall, the Charlotte Commons apartment complex will open near the University of Minnesota and will include three accessible, affordable two-bedroom units for families with two to four people. Located at 917 13th Ave. S.E. in Minneapolis, the units are ADA accessible and feature amenities including central heat/air, washer/ 14 JOIN THE MOVEMENT: nationalMSsociety.org
dryer and dishwasher. This project is provided through a partnership with Project for Pride in Living and ResCap. Monthly rent for a two-bedroom unit is $790. To qualify for Charlotte Commons, household income must be below 50 percent of area median income.
GET INVOLVED To be added to the interest list, contact Steve Korngable at 612-335-7974 or skorngable@mssociety.org.
CALENDAR
July 20–25
Bike MS: Star Tribune TRAM Ride
July 26 Aug. 7
Family Fun Day, Shoreview
Aug. 9
Managing MS as a Team, Bemidji
Aug. 9
Teen Day at the Beach, Plymouth
Aug. 16–17
MS River Road Run Motorcycle Tour
Aug. 17– 22
MS Camp, Maple Lake
Women Against MS luncheon, Minneapolis
Telephone consultations * Telephone consultations are free and by appointment only Family attorney consultations Rod Jensen, attorney at law July 15 and Aug. 19 Employment consultations Jennifer Johnson, tips on interviewing, resumes and more July 16 and Aug. 20
For information or to register Programs Contact registration line: 612-335-7970 Telephone consultations Contact Sarah or Heather: 612-335-7900 Walk MS, Bike MS and motorsport events Contact Cortney: 612-335-7971
Employment discrimination/private disability consultations Denise Tataryn, attorney at law Aug. 7 and Sept. 4 Financial planning consultations John Robinson, C.F.P.®, financial advisor Aug. 11 and Sept. 8
TOLL FREE NUMBER 800 582 5296 15
NEWS
Walk MS raises more than $2 million
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For the first time, Walk MS in the Twin Cities both started and ended at Minnehaha Park in Minneapolis. This year’s Walk MS events, held in 17 communities throughout the chapter area, raised more than $2 million.
ore than 9,000 people participated in Walk MS: Christopher & Banks Walk 2008 presented by Anchor Bank Sunday, May 4. Walk MS events were held in 17 communities throughout Minnesota and western Wisconsin. The 21st annual event raised more than $2 million to help fund cutting-edge MS research projects all around the world and support programs and services for people affected by the disease in the Minnesota Chapter area.
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