Cure SMA provides support to patients and families affected by spinal muscular atrophy and funds and directs research leading the way to a cure for SMA. Our dear friend Anne Davis and her family have been directly affected by SMA and we want to use this platform to shed light on this condition and charity in hopes that others might want to donate their time or funds to help find a cure.
A little of Anne’s story is below:
After several doctors appointments and missed physical milestones, our son Henry was diagnosed with a rare genetic neuromuscular disease called Spinal Muscular Atrophy (SMA) in February 2018 at the age of 10 months. SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
Fortunately, Henry started receiving the first FDA approved treatment, Spinraza, shortly after his diagnosis and has regained some of his lost strength. Thanks to the dedication of our community and the ingenuity of the researchers, we have Spinraza and Zolgensma (for children under 2) as well as several other treatments for SMA in the pipeline.
Please consider getting more involved with this amazing cause to help Henry and so many other families fight for a cure!