Marjorie Trew-Munson via Crowdrise
August 08, 2010
BENEFITING: Gwendolyn Strong Foundation
The Gwendolyn Strong Foundation was set up by Victoria Strong and her family after the diagnosis of their daughter Gwendolyn with SMA. The Gwendolyn Strong Foundation is a 501(c)(3) nonprofit organization focused on increasing awareness of SMA and accelerating research towards a cure.
As stated before, Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common, but publicly unknown disease: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. It is a degenerative disease, and the number 1 genetic killer in babies under 2 years old.
In addition, the SMA translational research approach used by researchers is now considered a viable research "model” with the potential for enormous benefit to millions of people impacted by other diseases, including ALS/Lou Gehrig’s, Alzheimer’s, Parkinson’s, Duchenne Muscular Dystrophy, Fragile X, and Tay Sachs Sandhoff, among others. So much is known about SMA and by finding a treatment and cure for it, the pathway to treatments and cures for many other diseases will become infinitely more attainable.