In a recent update on the 21st Century Cures Initiative, we shared how the SMA community has helped inspire this legistlation. Chairman Fred Upton has been a guest at our Hope on the Hill Congressional Dinner. He has also formed a strong relationship with Brooke and Brielle Kennedy, two sisters from his home state of Michigan who have SMA type II.
Earlier this week, the House of Representatives Energy & Commerce Committee, which Rep. Upton chairs, profiled the Kennedy sisters.
“I can and I will.” This is the motto of two brave little angels in Mattawan, Michigan, who are battling Spinal Muscular Atrophy (SMA), a rare disease that destroys the nerves controlling voluntary muscle movement. Their names are Brooke and Brielle Kennedy and they are an inspiration for Chairman Upton’s bipartisan 21st Century Cures initiative.
Brooke and Brielle were both diagnosed with Spinal Muscular Atrophy Type II shortly after their births. Their whole lives have been a constant battle with trial treatments and drugs, physical therapy, rehabilitation, and the many daily struggles SMA brings. But Brooke and Brielle have faced these challenges with bravery, optimism, and smiles…
With the help of the Kennedys and many other patient advocates, researchers, and health care innovators, the 21st Century Cures initiative continues to bring hope to those dealing with the thousands of diseases without cures. For the past year, the committee has been gathering information on how Congress can speed up the approval process for treatments and cures, expand medical research, encourage innovation, and ultimately save more lives.
Be sure to read the full story on the Energy & Commerce Committee website.
Thank you to Brooke, Brielle, Chairman Upton, and everyone who is working on this legislation!