Hey, it’s Allie here from Oklahoma! I am privileged to serve on the Cure SMA Adult Advisory Council and am part of a group of adults and family members with SMA who are in Washington, D.C. to help advocate for the SMA community.
On Thursday, our group of SMA community leaders from across the country will roll through the halls of Congress in support of policies and investments to address unmet needs for children and adults with SMA.
Our message: even with three effective SMA treatments, significant unmet need remains related to health, independence, and community living that the SMA community hopes future treatments and federal policies will address. Specifically, we will be seeking:
- Additional SMA research at the National Institutes of Health for new treatments to address fatigue, muscle weakness, and other everyday living challenges; and
- Disability-focused policies to help make air travel safer and more accessible for individuals with SMA and other passengers who fly in power wheelchairs.
Our group will be meeting directly with about 140 congressional offices. However, we cannot do this alone and need your help. The priorities of the SMA community need to be heard by every Member of Congress. Please help amplify our work this week by reaching out to your own Representative and Senators.
Your action will have an enormous impact. Our voices need to be echoed so our message cannot be forgotten.
Cure SMA Adult Advisory Council Member
P.S. If you’re interested in learning more about our advocacy work, consider following Cure SMA on social media for real-time updates and future recaps.