MDA Joins Forces to Protect NIH Funding

It’s no secret that MDA advocates are a force on Capitol Hill and have routinely commanded the hall of Congress during MDA on the Hill over the years.

Jennifer Lane and Rep Aderholt

But what if MDA teamed up with volunteers and advocates from other organizations to come together as one powerful group?

That is exactly what happened last week as MDA joined forces with volunteers from fellow non-profits and participated in the United for Cures Hill Day. Together, we urged Congress to support medical research funding for the National Institutes of Health (NIH).

Joining forces to increase medical research funding

United for Cures Hill Day brought together nearly 100 advocates from organizations like MDA, ALS Association, Parkinson’s Foundation, Lorenzo’s House, St. Baldrick’s Foundation, and many others on May 20, 2026. They gathered with one shared goal: to urge Congress not to cut NIH and instead invest MORE funds into medical research.

Jennifer Lane and Sen. Britt

“I wanted to meet my legislators face to face so they could understand how important NIH funding is, not only for me and my family, but for the whole NMD community,” said Jennifer Lane, an MDA Advocate from Alabama who lives with limb-girdle muscular dystrophy  (LGMD) 1C.

In 2025, the NIH faced a potential 40% cut in funding. A cut of this magnitude would have been devastating. Labs would close and clinical trials would stop, putting a halt to the amazing progress being made for cures and treatments, especially for the neuromuscular community. Thanks to the efforts of many, including MDA advocates, that cut was prevented. In fact, Congress even slightly increased funding for the NIH.

However, the threat is not over as the Trump Administration has proposed to once again cut NIH funding this year by over $5 billion.

Combining unique stories into one powerful message

Team Washington and Rep. Randall

In an effort to prevent future cuts and secure funding, a diverse group comprised of volunteers from a wide variety of organizations went to Capitol Hill together, all sharing different but powerful stories with elected officials.

“The people I met and worked alongside of at this United for Cures event were just as ambitious and lively as the community members specifically for MDA,” said MDA advocate Ranae Beeker from Washington State, who lives with facioscapulohumeral muscular dystrophy (FSHD). “They had such great personalities and were so fun, but most importantly, they had great passion, which encouraged me to think outside the box differently than I have in the past when I’ve attended a hill day. I definitely learned so much from these great team members.”

In the capitol

Participants met with over 80 Congressional offices from both political parties and urged members to support increased funding for NIH research.

“It was so amazing hearing the stories of the other advocates from the other organizations,” said Jennifer. “I had the honor of being in a group with [a woman from] the St. Baldrick’s Foundation. She lost her daughter who had a rare form of childhood cancer. Eight years later, she is still fighting for a cure for the cancer that took her child, because she doesn’t want other children and parents going through that loss.”

And that story is just one of many that moved members of Congress during this Hill Day.

The road ahead

Currently, Congress is debating on how much funding to give to the NIH for the next fiscal year. There is still time to make your voice heard as Congress has until September 30, 2026, to allocate funding for medical research.

We encourage everyone to visit MDA’s Advocacy website and write to your lawmakers and urge them to fully find the NIH.