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Fight Spinal Muscular Atrophy

Fight Spinal Muscular Atrophy  (SMA)

The No. 1 Cause of Death for Children Under Age 2

 
 
Katy and Scott Therriault and their young daughters, Alex and Ella, full of expectation and joy welcomed theirSpinal_Muscular_Atrophy beautiful baby boy, Billy, into their home on December 27, 2004. Their joy for Billy's arrival turned to alarm and sadness in just a few short months. Their infant son was beginning to lose muscle tone and showing difficulty nursing and breathing.  Billy was diagnosed with Spinal Muscular Atrophy (SMA) the number-one genetic cause of death in children under two.
 
This brave family has the support and love of everyone in their community. Their story is poignantly told in Invisible Heroes, a short documentary produced by Lee Baldwin Hafner. The Therriault's personal struggle and SMA science have also been featured in the Connecticut Post. 
 
One in 40 people carry the gene that causes SMA. Because of the severity of the disease and the promise of research to produce therapies and a cure in the near term, the National Institutes of Health has designated SMA as a "model" disease.  This designation has created a pilot research program at NIH from which many other disease research efforts can learn. More than 40 genetic childhood diseases as well as adult-onset central nervous system diseases like Parkinson's Disease, ALS (Lou Gehrig's Disease) and Alzheimer's Disease benefit from SMA research. 
 
The Therriaults' brave work to bring more visibility to SMA is the latest chapter in a powerful story that has included many families for many years.  In 1991, an organization named after a five-year-old with SMA was born: "Andrew's Buddies."  Later to become known as "FightSMA" (see related story below). 
 
Richmond-based FightSMA burst onto the scene with a blitz that raised $100,000 for medical research in just 30 days. Since then, this ambitious grassroots movement has set its sights ever higher, relentlessly working to find a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. 
 
This nonprofit, 501(c)(3) corporation which began around a kitchen table has raised nearly $7 million for SMA research. With the counsel of its scientific advisory committee, FightSMA has awarded grants to research institutions in the United States, Canada, the United Kingdom, Italy, and France and spawned chapters in 17 cities. The group has enjoyed the support of such figures as NBC anchor Lester Holt and Fox Football commentator Howie Long, a former honorary chair of FightSMA. 
 
FightSMA works to increase federal research funding at the National Institutes of Health (NIH). Advances in SMA research helps to advance other disease efforts. As one researcher has written: 
 
"SMA genetic research is providing a novel model for effective treatments not just for this one condition, but for a much wider array of disorders. This pharmacologic gene modulation may be usefully employed in the hunt for drugs for diseases such as Tay-Sachs Sandhoff, Parkinson's, Alzheimer's, Deafness/Dystonia, Friedreich's Ataxia, and others..." 
 
-- Alex MacKenzie, M.D., Ph.D., University of Ottawa
 
Corporations and foundations around the country have supported and partnered in the fight against SMA, including Children's Wear Digest (CWD), AMF Bowling, SunTrust, Dominion, Chick-fil-A, Chesapeake Capital, the Toy Industry Foundation, Target and Outback Steakhouse. 
 
The SMA community is making strides in many areas, and most recently, making their voices heard on Capitol Hill.  Building upon years of successful bicameral report language, the entire SMA community has come together to wave the banner for the SMA Treatment Acceleration Act (HR 3334, S 2042). 
 
With efforts led by Families of SMA, FightSMA, MDA and the SMA Foundation, legislative language was drafted and introduced in late summer of 2007.  The bill was introduced by Rep. Patrick Kennedy (D-RI-1) and Rep. Eric Cantor (R-VA-7) in the U.S. House of Representatives, and by Sen. Debbie Stabenow (D-MI) and Sen. Johnny Isakson (R-GA) in the U.S. Senate. 
 
Building upon the success of the SMA Project at NINDS, the SMA Treatment Acceleration Act authorizes additional federal funding in order to raise public awareness, encourage cross-institute collaboration, launch national clinical trials, and improve the existing patient registry system. 
 
Families and friends of the SMA community have been incredible advocates for their cause, launching national letter-writing campaigns, calling their Members of Congress, and making district visits.  As of September 26, 2008, the SMA Treatment Acceleration Act boasts 83 cosponsors in the House and 21 cosponsors in the Senate, and the numbers continue to grow almost daily as the SMA community garners support for this paramount legislation. 
 
 
FightSMA / Andrew’s Buddies
 
Martha Slay
Founder and President
 
In 1987, Martha Slay was handed a diagnosis for her infant son, Andrew. In 1991, she founded Andrew’s Buddies Corporation, a nonprofit organization whose mission is to raise awareness and critical funds for spinal muscular atrophy (SMA) research. The group has spawned 17 chapters in the United States and Canada and has supported research in more than 43 institutions worldwide. 
 
Mrs. Slay’s efforts to raise funds and awareness for SMA research have been recognized by Virginia’s Congressional and Senate leaders, by the Department of Health and Human Services, by the NIH, and by the White House. She has been interviewed by NBC’s Today and CNN News and has been written about in numerous publications including Parents Magazine which named Martha and Joe Slay “Parents of the Month.”  FightSMA has also recently been featured in USA Today as well as plugged on the popular celebrity blog, PerezHilton.com, under “Worthwhile Causes,” resulting in an astounding 30,000 additional hits in less than one week. 
 
In 2005, Mrs. Slay used her experiences to develop an advocacy program called Fighter Mom™. This program shows parents facing childhood illness or disabilities how to raise awareness for their cause and secure valuable research dollars. The Fighter Mom™ program has been utilized by mothers battling conditions including Spinal Muscular Atrophy (SMA), ADHD, Anxiety, Cerebral Palsy, Lebers Hereditary Optic Neuropathy, Parry Romberg disease, Myotonic Muscular Dystrophy, Mitochondrial myopathy, encephalopathy, lactic acidosis and stroke (MELAS), Sarcoma, Autism, Impulse Control Disorder, sensory integration issues, processing and learning disorders, and in uterus stroke.  As part of Fighter Mom’s mission and outreach, FightSMA, along with the Toy Industry Foundation, hosted a day-long workshop called “Fighter Mom Friday” on May 9, 2008. 
 
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Martha_20Slay_0
Martha Slay received her Bachelor and Master of Music in Vocal Performance from Indiana University. She has performed in opera houses and with symphony orchestras as a Mezzo Soprano. Martha has been active as a volunteer in numerous capacities at The Collegiate School, at her church, and as a drama instructor for inner-city youth with Richmond based Elijah House Academy. 
 
Martha and Joe Slay have three children, Andrew, Patrick and Megan.   
 
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