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Spinal Muscular Atrophy Nonprofit Group Gets an Online Assist
A local nonprofit organization dedicated to raising research funding and awareness in the fight against Spinal Muscular Atrophy received a boost this month when an online marketplace selected it as its October nonprofit “Cause of the Month.”
The Gwendolyn Strong Foundation was started by Victoria and Bill Strong of Santa Barbara after their then-6-month-old daughter, Gwendolyn, was diagnosed with the terminal disease. Now 2, Gwendolyn was born healthy but the degenerative nature of her condition inspired the Strongs to seek a cure and help other families grappling with Spinal Muscular Atrophy, the No. 1 genetic killer of young children.
Last month, their foundation launched ShopToEndSMA.com, a partnership with We-Care.com. Under the program, online shoppers, through the participation of hundreds of major Internet retailers, can donate a portion of their Web purchases to the Gwendolyn Strong Foundation. Earlier this month, We-Care.com selected the foundation as its October Cause of the Month.
“ShopToEndSMA.com and our partnership with We-Care.com is an example of how GSF is focused on harnessing the power of the Internet and social media to do our part in helping cure SMA once and for all,” Bill Strong said.
“The cure for SMA is truly within reach and each and every collective penny makes a difference in the timeline of these groundbreaking SMA-focused research programs.”
Spinal Muscular Atrophy is a terminal, degenerative disease that affects the voluntary muscles in infants and children, including their ability to walk, sit, stand, eat, breathe, and even swallow. Some 90 percent of children born with SMA die before age 2, according to FightSMA.org. Although the disease is not a household name, the gene responsible for it is unknowingly carried by 1 in 40 people, or nearly 10 million Americans. According to Strong, there currently is no treatment or cure, but SMA research researchers have said one is possible in the next five five years if provided the appropriate resources.
Click here for more information on the Gwendolyn Strong Foundation, or click here for more information on FightSMA.org.
— Noozhawk publisher Bill Macfadyen can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk.
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» on 10.20.09 @ 04:39 AM
This is such wonderful exposure for this family and the other families struggling with this awful disease. Thank you for covering this story!
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