Member Spotlight: Cure SMA
By Katherine Scott, Senior Manager, Member Services & Certifications
Spinal muscular atrophy (SMA) – the number one genetic cause of death for infants – robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. Since its inception in 1984, Cure SMA has grown to be the largest network of families, clinicians, and research scientists working together to advance SMA research, support affected individuals/caregivers, and educate the public and professional communities about SMA. It leads the way in not only providing families the support they need but investing in research that will make the greatest impact right away.
To date, Cure SMA has invested more than $75 million in research, funding half of all the ongoing new drug programs for SMA. This expertise and unwavering commitment have made today’s treatment breakthroughs possible. With more than a dozen companies involved in SMA research, including some of the biggest pharmaceutical companies in the world, there are now two FDA approved SMA treatments, with more advancements on the horizon.
But the organization is rooted in its desire to provide education and support for patients, their caregivers, and health care providers. These resources are provided at no cost to those affected by SMA and include educational materials, care packages and equipment support, community events and fundraisers, and the largest SMA conference.
A member since 2018, Cure SMA joined the National Health Council (NHC) because its patient-advocacy values align with the NHC – a focus on ensuring access to quality health care. The organization has sought to share information related to research and patient care for people with rare disease, as well as learn from like and related organizations who can influence or support the mission for Cure SMA.
Learn more about Cure SMA. Visit their website today.
If you would like more information on NHC membership, please contact me.