Each September 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, the number one genetic cause of death for infants.
“Our voice helps us reach other families who are struggling with the same disease, reach supporters who can help us raise money to help support research,” says the Camp family of their efforts to raise awareness of spinal muscular atrophy (SMA), which affects their youngest child, Asher.
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 about 1 in 50 Americans (over 6 million in total) is a genetic carrier for the mutation that causes SMA, many have never heard of SMA until it affects their family.
But there’s great reason for hope. In the last 15 years, the SMA drug pipeline has gone from two potential drugs in the beginning stages of preclinical discovery, to 18 ongoing drug programs today. Seven of those drugs are now being tested in clinical trials. While growing, aggressive investment is needed to continue moving these drugs forward, the progress thus far has given the community hope.
So August has become a time not only to raise awareness of spinal muscular atrophy and the need for a cure, but of the vibrant, hopeful, compassionate SMA community.
Our community is the driving force behind the progress we’ve made. Cure SMA is the leading national non-profit dedicated to developing a treatment and cure for SMA. We’ve invested $59 million in funding for research, and that number reflects the strength of our community and their dedication to advancing SMA research.
In addition, Cure SMA’s 34 chapters are all led by volunteers from the community. The community has grown to include over 110,000 supporters and families.
Learn more about the SMA community and the activities planned for SMA Awareness Month by visiting www.cureSMA.org.
Written by Dr. Jarecki, who serves as the research director of Cure SMA, and coordinator of the Cure SMA Scientific Advisory Board. Prior to joining Cure SMA, Dr. Jarecki studied neuromuscular development in graduate school at Yale University and was a post-doctoral fellow at Stanford University. Most recently she was a senior scientist at Invitrogen Corporation and also Vertex Pharmaceuticals, where she led a drug discovery program to identify potential small molecule therapeutics for SMA.