Cure SMA Launches Advocacy Campaign to Secure New Federal Research for SMA

Individuals with SMA, particularly adults and children who were born before existing SMA treatments, suffer from debilitating muscle loss that significantly impairs their ability to swallow, walk, and perform other ordinary functions of everyday life. Individuals with SMA and their families seek research into new treatments to gain muscle strength, achieve new motor function, reduce fatigue, improve fine motor skills (i.e. handling small objects, brushing teeth), improve respiratory function, decrease dependency on assistive devices (i.e. wheelchairs, cough assist machines), improve swallowing, improve voice strength, and address other unmet needs. Additional research into these common unmet needs will also benefit people with other neuromuscular diseases or those who have experienced nerve damage, spinal cord injuries, and other muscle-related disorders.

Congress created a Medical Research Program at DOD to fund groundbreaking research to transform health care for military service members and the American public. The program is intended to “fill research gaps by funding high impact, high risk and high gain projects that other agencies may not venture to fund.” To help spur further treatment innovation in SMA, Cure SMA seeks $10 million in SMA research within the DOD peer-reviewed medical research program to address the needs of all individuals with SMA, including those from military and veteran families.

Yes. Approximately, one in 50 Americans is a genetic carrier of SMA, including about 384,000 military service members and veterans, according to Cure SMA estimates. If both parents are SMA carriers, every child they have together has a 25% chance of being diagnosed with SMA. Cure SMA highlighted the connection between SMA and military/veteran families in a new legislative brief to help educate Congress about the needs of individuals with SMA, including those from military and veteran families. Future SMA research funded through this DOD program would benefit all individuals and families impacted by SMA, not only those with connections to the U.S. military. In addition, advances discovered through SMA research could also benefit individuals with other neuromuscular diseases and those who experienced nerve damage, spinal cord injuries or muscle disorders.

The NIH is and will always be an important funder of medical research, including for SMA. That is why Cure SMA and the SMA community have worked the past few years to add an SMA research provision to recent NIH budgets. Our successful efforts will help ensure that research proposals submitted by SMA researchers are fairly considered for funding. The DOD program is simply another federal funding source for medical research.

Cure SMA has launched a new advocacy campaign where individuals with SMA, their families, friends, colleagues, and the general public can support federal SMA research by signing onto a letter to their state’s congressional leaders. Click here to find the letter and sign-on survey for your state. Our goal is to have several pages of signatures for each state, and so please sign and share with your networks.

Further questions? Contact Cure SMA Advocacy at [email protected].