Spinal muscular atrophy (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. Though SMA is the number one genetic cause of death for infants, and about 1 in 50 Americans is a genetic carrier for SMA, many have never heard of the disease until it affects their family.
Thanks to the Cure SMA community, that is changing. Each August is SMA Awareness Month, a time when families in the Cure SMA community undertake special efforts to amplify their year-round mission of raising funds and awareness for SMA. In doing so, we hope to continue expanding the community that is working to develop a treatment and cure for SMA.
In the last 15 years, the SMA drug pipeline has grown to 18 ongoing drug programs. Six of those drugs are now being tested in clinical trials. Much of this success in drug development has come through these efforts to expand the SMA community. The efforts include reaching out to family, friends, neighbors, and co-workers to participate in fundraisers or awareness activities. They include reaching out to the researchers and pharmaceutical companies who are developing the drugs, ensuring our whole community is working toward the same goal. And increasingly, they include reaching out to regulators, allowing the community’s voice to be heard on topics like benefit/risk and clinical meaningfulness.
So the progress we’ve made reflects not only the passion of our core community, but the drive that they have to expand that community, welcoming in all those who can help us develop a treatment and cure for SMA. From the over $60 million that we’ve invested in research, to our Annual SMA Conference that recently gathered over 1,500 families and researchers—the impact is evident in everything we do. We see SMA Awareness Month as a time to celebrate the vibrant, hopeful, compassionate community we have, and strengthen our outreach to those who have yet to join us.
Learn more about the SMA community and the activities planned for SMA Awareness Month by visiting www.cureSMA.org.