Thank you for the opportunity to post as “guest bloggers” on Care2.com as we campaign across the U.S. to raise much needed awareness about Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children.
Although not commonly known, SMA kills more children than any other genetic disease; few babies live beyond the age of two. Our daughter, Gwendolyn, is one baby fighting SMA and, at only 21-months-old, Gwendolyn has already outlived most of her peers in the fight. SMA is a degenerative, terminal disease that eventually impacts every muscle in the body, hindering the ability to walk, sit, stand, eat, breathe, and swallow. The mind always remains unaffected and children with SMA are bright, sensitive, and playful in spite of their failing bodies. One in 35 people, or nearly 10 million Americans, unknowingly carry the gene responsible for SMA and recent research is showing that the prevalence may be even higher.
There is currently no treatment and no cure, but there is hope as the National Institutes of Health (NIH) has coined SMA as the “disease closest to treatment” of more than 600 neurological disorders and 50 of the nations leading researchers have publicly signed a statement stressing that a viable treatment or cure for SMA is possible in the next 5 years IF given the proper resources.
When Gwendolyn was diagnosed with SMA our local neurologist told us that there was nothing that could be done and to take her home and love her. And while we no doubt live every second of every day cherishing our precious time with Gwendolyn, sitting idly and doing nothing was not an option for us. After learning how mature SMA research is and how close researchers are to a cure, we have made it our passionate mission to leave no stone unturned in raising awareness about SMA. We truly believe that through awareness SMA will go from being on the cusp of a cure to a curable disease. And while we hold little hope that our efforts will impact Gwendolyn’s life, we are hopeful that in some small way what we are doing will impact future SMA generations so they will not have to go through what our little Gwendolyn has endured.
Get Involved and Help End SMA:
http://SponsorAMile.com - We formed the Gwendolyn Strong Foundation (GSF), a 501(c)(3) status pending nonprofit organization, to raise awareness about and fund research for SMA. As one of our first awareness and fundraising campaigns, we are driving 5,000 miles from California to Mississippi to unite Gwendolyn with her 104-year-old great-grandfather and are rallying SMA support along the way. We launched http://SponsorAMile.com, in which each one of Gwendolyn’s 5,000 miles is sponsored for $10 per mile. 100% of the proceeds go directly to GSF to benefit SMA awareness and research. Our goal is to raise $50,000 and to date we have raised over $32,000. We left California on June 21 headed for Mississippi armed with flyers, banners and a call to action – End SMA! To help us reach our goal, sponsor one (or several) of Gwendolyn’s miles by visiting http://SponsorAMile.com.
http://PetitionToCureSMA.com – We started http://PetitionToCureSMA.com as a grassroots effort to drum up broad national support of legislation currently in Congress, The SMA Treatment Acceleration Act, which would help organize SMA research striving towards a cure. To date, our petition has received over 66,000 signatures from around the world and the data from our petition is effectively lobbying members of Congress in support of this important legislation. To sign our petition and tell Congress you support a cure for this leading infant killer, visit http://PetitionToCureSMA.com.
For more information on SMA and Gwendolyn’s daily life visit http://GwendolynStrong.com
For more information on SMA and the Gwendolyn Strong Foundation visit http://GwendolynStrongFoundation.org
by Bill and Victoria Strong, parents of Gwendolyn and founders of The Gwendolyn Strong Foundation