On Thursday, November 20th, Jeannine DeSoi, RN, MDF Support Group Facilitator; Dylan Farnsworth, PhD, a nationally recognized myotonic dystrophy researcher at the RNA Institute and a 2023 MDF Grantee; and Kevin Brennan, MDF Advocacy Consultant, presented U.S. Senator Chris Van Hollen (D-MD) with the 2025 Myotonic Dystrophy Foundation Congressional Advocacy Award. Each year, the MDF National Advocacy Committee (NAC) recognizes Members of Congress who help advance myotonic dystrophy (DM) research and care for individuals and families across the DM community.

Senator Van Hollen’s Support for DM Research Funding

Elected to the U.S. Senate in 2016, Senator Van Hollen is a senior member of the Appropriations Committee and has been a strong supporter of MDF’s annual campaign to maintain eligibility for myotonic dystrophy research funding through the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). This year marks the ninth consecutive year of PRMRP eligibility for DM, during which researchers have been awarded $26.5 million in federal research grants.

Championing Dedicated CDMRP Research Funding

Senator Van Hollen also added his voice to MDF’s advocacy campaign to secure $10 million in dedicated myotonic dystrophy research funding within the Congressionally Directed Medical Research Program (CDMRP), including joining Senator Amy Klobuchar’s (D-MN) annual letter of support for the DM community.

A Continued Commitment to the DM Community

Although this year’s Senate Defense Appropriations bill did not include the CDMRP request, Senator Van Hollen reaffirmed his commitment to MDF’s PRMRP and CDMRP funding priorities in next year’s federal budget. During the award presentation, he stressed the importance of strong federal investment in biomedical research—especially research aimed at understanding and treating myotonic dystrophy. He encouraged MDF advocates to continue sharing their stories and perspectives with Members of Congress as we work together to deliver meaningful progress for the DM community.

Thank you Senator Van Hollen for you support of the myotonic dystrophy community!

Dylan Farnsworth, PhD, and Jeannine DeSoi, RN, stand in front of the U.S. Capitol while representing the myotonic dystrophy community during MDF’s Congressional advocacy visits.

Dylan and Jeannine meet with Jordan Jablonski, Health Legislative Assistant to Rep. Joseph Morelle (D-NY), a senior House Appropriations Committee member and supporter of MDF’s $10 million CDMRP myotonic dystrophy research request.

Dylan Farnsworth, PhD; Jeannine DeSoi, RN; and Kevin Brennan present MDF’s 2025 Congressional Advocacy Award to Senator Chris Van Hollen in recognition of his leadership on federal myotonic dystrophy research funding.

Dylan and Jeannine discuss myotonic dystrophy research and funding priorities with Senator Chris Van Hollen during MDF’s 2025 advocacy meetings on Capitol Hill.

Dylan meets with Emily Silverberg, Deputy Chief of Staff and Legislative Director for Rep. Paul Tonko (D-NY), a senior House Energy & Commerce Committee member and past co-signer of the Kiggans-Moskowitz CDMRP myotonic dystrophy funding letter.