Today, I am asking for your help raising money for the Gwendolyn Strong Foundation, a nonprofit dedicated to funding research towards a cure for Spinal Muscular Atrophy (SMA). SMA is a type of muscular dystrophy and is the number one genetic killer of infants and young children. It is currently an incurable, terminal illness.
My friends the Byrds are parents to 4-year-old twins who unfortunately happen to suffer from SMA. Since this condition does not affect cognitive ability, Kyle and Lauren are happy, bright children. However, due to SMA, neither child was able to sit up or roll over as an infant nor will they ever enjoy riding a bike and playing tag, or be able to perform the dozens of other activities we all take for granted every day.
Here is some additional information about SMA:
-SMA is the number one genetic killer of young children.
-About 1 in 35 people unknowingly carry the gene responsible for SMA.
-1 in every 6,000 babies is born with SMA; SMA prevalence is comparable to ALS and Cystic Fibrosis.
-SMA impacts the ability to walk, sit, stand, eat, breathe, and swallow. SMA does not impact the mind and children with SMA are bright and social.
-There is currently no treatment and no cure for SMA.
But there is hope:The National Institutes of Health has chosen SMA as the neurological disorder closest to a cure. Leading U.S. researchers, such as Nobel laureate James Watson, have stated that with proper funding, a viable treatment for SMA is possible within five years.
Any donation helps and all donations are tax-deductible, with a receipt provided for your records.
On behalf of the Byrds and the thousands of other families currently fighting SMA, thank you for your consideration and generosity. Your donation will help ensure that a lack of funding does not stand in the way of finding a cure for this cruel illness.
Want to learn more about my friend’s twins with SMA? Check it out here: ByrdsForACure.com