MANAGING EDITORPamela K. Johnson
MANAGING HEALTH EDITORE. Thomas Chappell, MD
HEALTH EDITORSGillian Friedman, MDLarry Goldstein, MDNatalia Ryndin, MD
CONTRIBUTING SENATORU.S. Sen. Tom Harkin (D-IA)
EDITORSJan DemskisDahvi FischerRenne GardnerSonnie GutierrezEve Hill, JDJosh PateDenise Riccobon, RNMaya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff
CONTRIBUTING WRITERSLinda Boone HuntGale Kamen, PhDLaurance Johnston, PhDAndrea KardonskyDeborah Max Myles Mellor - Crossword PuzzlePaula Pearlman, JD John PaizisRichard PimentelAllen RuckerKristen McCarthy ThomasBetsy Valnes
HUMOR WRITERSGeorge Covington, JDJeff CharleboisGene Feldman, JD
WEB EDITORJoy Cortes
GRAPHIC ART/ILLUSTRATIONScott JohnsonKeriann MartinMelissa Murphy - Medical Illustration
The views expressed in this issue maynot be those of ABILITY MagazineLibrary of Congress Washington D.C. ISSN 1062-5321
Copyright 2009 ABILITY Magazine
DIRECTOR OF BUSINESS AFFAIRSJohn Noble, JD
MARKETING/PROMOTIONSJo-Anne BirdwellJacqueline MigellAndrew Spielberg
NEWSSTAND CIRCULATIONJohn Cappello
NON-PROFITSABILITY Awareness/Fuller CenterHabitat for Humanity
6 SENATOR HARKIN The Christopher Reeve Act
8 DAY OF SERVICE Of Kings & Presidents
10 GREEN PAGES Dont Let Money Fly Out the Window
12 HUMOR Theres Nothing Out there
14 FILM CIRCUIT Reeling Through Sundance
16 MILLARD FULLER His Work Will Go On
18 SKIING A Crash Course
22 MULTIPLE SCLEROSIS One Day At The Beach
26 SECRET LIFE Young Actors Get Their Due
30 MISS INTERNATIONAL How She Won the Crown
38 ASHLEY FIOLEK Teen MotoCrosser Zooms Ahead
46 UNITED CEREBRAL PALSY Game On!
48 GEORGE COVINGTON Dont Look Now, Bambis Back
50 CHRISTOPHER REEVE His Foundation; His Champions
60 CROSSWORD PUZZLE Guess Your Best!
64 EVENTS & CONFERENCES
74 SUBSCRIBE TO ABILITY MAGAZINE
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complex diseases of the brain and centralnervous system.
Later on, I got to know Christopher as afriend. He was warm with an impish senseof humor and a big smile. It was clear thathe spent many of his waking hours gather-ing information about spinal cord injuriesand the research being conducted in labo-ratories and clinics throughout the world.
Christopher told me and my colleagueson the committee that the kind ofresearch that we were doing on spinalcord paralysis was disjointed and notnearly as effective as it could be. Hedevoted himself to working with oth-ersscientists and researchers, as wellas members of Congress and theirstaffsto come up with ideas for bettercoordination of spinal cord studies with-in a unified structure.
These ideas were incorporated into legisla-tion that eventually became known as the
Christopher and Dana Reeve Paralysis Act. Sadly, hisdeath in 2004 robbed the paralysis community of itsmost passionate and effective advocate. Dana continuedher husbands quest until her own tragic death in 2006from cancer. At that point, thousands of Americanswhose lives have been touched by paralysis, continuedthe Reeves advocacy work, often at a cost to their ownhealth and wealth.
The act addresses a less-than-optimum status quo inwhich paralysis research is being carried out across mul-tiple disciplines with no effective means of coordinationor collaboration. Without these two components, time,effort and valuable research dollars are used inefficient-ly. Also, families affected by paralysis too often remainunaware of critical research results, information aboutclinical trials and best practices.
The bills goal is to:
improve access to services for people with paralysisand other disabilitiesprovide information and support to caregivers andtheir familiesdevelop assistive technologyprovide employment assistanceencourage wellness among those with paralysis
Christopher and Dana spoke up for all people livingwith disabilities. They spoke up for Parkinsons andALS research. They advocated for more generous fund-ing for the National Institutes of Health. The Reevesalways held out hope that Christopher would recoverfrom his spinal cord injury, and they fought just as hardfor others recovery as well.
A COURAGEOUS QUEST Elections matter! Case in point: the Christopher andDana Reeve Paralysis Act.
I introduced this bill in 2002 in an effort to advance col-laborative research into paralysis and improve the quali-ty of life for people living with paralysis and mobilityimpairments. Over the years, the bill passed twice in theHouse, but was repeatedly obstructed in the Senate.With the expanded ranks of supporters in the Senate,thanks to last Novembers election, the Christopher andDana Reeve Paralysis Act was one of the first pieces oflegislation passed this year.
In 1995, Christopher Reeve, famous for his role in thepopular Superman movies, was in an equestrian acci-dent that injured his spinal column and left him para-lyzed from the neck down. He was fortunate that hecould afford the very best doctors and nurses, the bestcaregivers and therapies. He could have just with-drawn into himself and focused on his own well-beinga full-time job in and of itselfbut he made adifferent choice, which proved him to be a man ofgreat character.
I first met Christopher in 1998 when he testifiedbefore the Senate Appropriations Subcommittee onLabor, Health, Human Services and Education; I wasa ranking member on that committee at the time. Itwas clear to me that he was a man on a mission tohelp others with disabilities. He not only put a face onspinal cord injury, but he also encouraged neuroscien-tists around the world to intensify research on
Now that the Christopher and Dana Reeve Paralysis Acthas passed the Senate, we hope it will soon pass theHouse, and then be signed into law by President Obama.If the Reeves were still with us, they would be the firstto acknowledge that even with this new law in place, wewould still have unfinished business. As long as there ishope for better outcomes with spinal cord injuries,Parkinsons, ALS and other such diseases, our work isnot done. As long as people with disabilities are forcedto live in nursing homes because Medicaid wont coverhome care, we cannot rest.
If we have just half the commitment, tenacity andcourage that Christopher and Dana Reeve had, then wecan make great inroads into these challenges.
Senator Tom Harkin
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