Aug. 22 designated Spinal Muscular Atrophy Awareness Day in Michigan

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LANSING, Mich.—State Sen. Tonya Schuitmaker said today that Monday, Aug. 22, 2011 has been proclaimed Spinal Muscular Atrophy (SMA) Awareness Day by Gov. Rick Snyder at the request of Mattawan residents, Eric and Sarah Kennedy.

The Kennedys lives changed in December 2008 when their eldest daughter was diagnosed with SMA at 16 months of age. Then, just weeks later, their second daughter was born and diagnosed with SMA as well.

SMA is known to cause degeneration in voluntary muscle movement, and is the leading genetic killer of children under the age of 2. One in 40 Americans carry the gene that causes the disease. Eric and Sarah unknowingly carried the gene responsible for SMA and, despite having no family history of the disease, had a 25 percent chance a child would be affected. There is at present no known treatment or cure for SMA.

“My husband, Eric, and I have become staunch activists nationally while we continue to fight the hardest for our beautiful daughters,” said Sarah Kennedy. “After he completed his deployment in Afghanistan he returned home to join me on the front lines in the fight of our lives: saving our daughters from the relentless onslaught of this disease.”

Those fortunate to survive past age 2 face a difficult future as their muscles slowly deteriorate, leaving them unable to walk, crawl, sit-up or even swallow. SMA crosses all racial, ethnic, religious and gender boundaries and, while it is primarily diagnosed in children, it can affect people of any age. Sensation and intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. 

“Families of SMA, a grassroots organization of which I am a member, is funding drug development programs and clinical trials, which may mean a treatment is on the horizon but we need all the help we can get,” said Mrs. Kennedy. “We thank Governor Snyder and Senator Schuitmaker for their support in helping to bring awareness to Michiganders.”

Schuitmaker urged residents to join the Kennedy family and Families of SMA to get involved and support the effort to raise awareness and find a cure for SMA.

For more information or to get involved in your community, please visit the Kennedy website at www.brookeandbrielle.com or the national organization website at www.fsma.org.

Additionally, all Kalamazoo Applebee’s locations will donate 15 percent of patrons’ bills to the nonprofit organization when they mention Spinal Muscular Atrophy Awareness Day on Aug. 22.
 

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