Cure SMA is an organization that offers a sense of community, specialized equipment, and education about both the disease and care options to families navigating the painful and challenging reality of SMA.  In addition, Cure SMA supports research and community fundraising through their website and publication.


If you have a child who has recently been diganosed, or if you or someone you know is looking for information, we encourage you to visit

The Hearts For Ezra Foundation is a 501 (c)(3) that was started in 2013 with the mission of raising awareness and fighting for a cure for Spinal Muscular Atrophy. HFE started as the idea of Dr. Kieran Kammerer, Ezra’s pediatrician, as a way to honor Ezra and is run by his parents Emily and Ethan Bessey. Our hope is that with awareness comes funding and with funding comes a cure.