Cure SMA seeks $10M in DOD funding in advocacy campaign
Funding would be dedicated to address unmet challenges in SMA
Cure SMA is leading an advocacy campaign for new research funding from the U.S. Department of Defense (DOD) that would be dedicated to addressing unmet challenges for people with spinal muscular atrophy (SMA).
The campaign is seeking $10 million in SMA-dedicated funding from the DOD’s medical research program, which was created by Congress to help fill gaps in medical research that could improve healthcare for military service members as well as the American public.
To support the campaign, Cure SMA has created a tool for members of the SMA community in the U.S. to sign onto letters to their congressional representatives.
“Our goal is to have several pages of signatures for each state, and so please sign and share with your networks,” the advocacy group states on its website.
SMA is a genetic disorder characterized by progressive muscle weakness and wasting. Over the last decades, three new SMA treatments have been approved in the U.S., and all of them have been proven to slow the progression of the disease. However, many people living with SMA, particularly those born before current treatments were made available, continue to experience substantial difficulties with day-to-day activities that people without muscular disorders may take for granted.
Research into new treatments to improve motor function, muscle strength
The advocacy campaign seeks funding to address these unmet needs, urging research into new treatments to improve motor function and increase muscle strength. Other unmet needs that may be addressed by the research include new ways to reduce fatigue, improve speaking and swallowing abilities, boost lung function, and decrease patients’ reliance on assistive devices like wheelchairs or cough assist machines.
As part of the campaign, Cure SMA has created a legislative brief to educate congressional representatives about the impact of SMA, particularly highlighting how the disease affects military service members and veterans.
SMA is chiefly caused by mutations in the gene SMN1. Everyone inherits two copies of this gene, one from each biological parent. SMA develops when both copies are mutated. People who have one mutated copy and one healthy copy are known as carriers, because they will not develop the disease but may pass it on to their biological children. There’s a 25% chance that the child of two carriers will have SMA.
According to Cure SMA, about 1 in 50 people in the U.S. are SMA carriers. As such, the group estimates that more than 380,000 military service members and veterans are carriers for SMA. The legislative brief highlights the logistical and economic toll that having a child with SMA can have on military families, sharing stories of the experiences of several families to drive the point home. New research to address these needs will help the families as well as members of the SMA community in the general public, Cure SMA stresses.
“Direct funding for DOD research in SMA is needed given the tremendous hardship SMA places on military service members, veterans and their families,” the brief states.
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