Advocate for myotonic dystrophy

By speaking up together, we can help increase research funding, advance new therapies, and improve care for everyone living with DM.

How we're driving change

The Myotonic Dystrophy Foundation drives change by uniting the DM community to advocate for stronger research funding, better care, and faster progress toward treatments. By engaging policymakers, empowering advocates, and amplifying patient voices, MDF helps shape public policy, advance clinical research, and improve quality of life for everyone affected by myotonic dystrophy.

Over a decade of myotonic dytrophy advocacy

2025

2024

2023

2022

2021

2020

2019

2018

2017

2016

2015

2014

DM added to PRMRP for 9th Year in a row; $23M PRMRP funding since 2018.
11 Members of Congress support $10M DM CDMRP request.
$0 PRMRP Funding.
NIH Grant Funding Pending.

16 Members of Congress support $10M request for new DM research in Congressionally Directed Medical Research Program (CDMRP).
$9M NIH Funding.

Senate Adds DM to PRMRP for 7th Year in A Row.
$3.1M PRMRP Funding.
$13M NIH Funding.

Senate passes International DM Awareness Day resolution.
Congress launches NIH Repeat Expansion Disorder Initiative: REDI.
Record $8.8M PRMRP Funding.
$12M NIH Funding.

Learn more about International DM day

Sen. Kaine introduces Sen. Res 336, declaring 9/15 International Myotonic Dystrophy Awareness Day.
$300K PRMRP.
$11M NIH Funding.

Congress includes provision in annual spending bill urging increased federal funding for DM research citing need "to develop the first ever FDA approved treatment for this inherited genetic disorder."
$2.3M PRMRP Funding.
$13M NIH Funding.

Tim Haylon testifies before the House Appropriations Committee urging more DM research at NIH.
$2.4M PRMRP Funding.
$12M NIH Funding.

U.S. Senate adds DM to Peer Reviewed Medical Research Program (PRMRP).
$3.1M PRMRP Funding.
$13M NIH Funding.

Social Security adds Congenital DM to Compassionate Allowance Program, enabling individuals to quickly qualify for disability benefits including health insurance coverage.
Myotonic Dystrophy PFDD Voice of the Patient report released.
$11M NIH Funding.

MDF hosts 1st ever DM Patient-Focused Drug Development "PFDD" meeting, with FDA to stress urgency for patient centered DM treatments.
$9M NIH Funding.

1st MDF Annual Conference in Washington, D.C. features US Senate briefing on DM Research Funding.
$9M NIH Funding.

Kayla Vittek and her mom Lisa Harvey provide congressional testimony in support of the MD-CARE Act.
$9M NIH Funding.

Change happens when we speak together

When our community unites, our voices are stronger. By advocating, educating, and supporting one another, we drive progress in care, therapies, and research for myotonic dystrophy.

Why should I become an advocate?

You have a voice and a vote, and they matter! When members of Congress hear directly from their constituents, they better understand what issues are important to the people they represent. If they never hear from the DM community, they may not realize how urgently research funding and supportive policies are needed.

Your outreach can influence how a Senator or Representative approaches a vote or chooses to support DM-related priorities. Advocacy is one way you can help shape decisions that improve the lives of people living with DM.

What is Grassroots Advocacy?

Grassroots advocacy is when individuals come together to educate elected officials about the needs of their communities and ask for support. When people who share common goals speak up collectively, they can influence funding decisions and public policies that affect the lives of people across the country, including those living with DM.

Can one person really influence Congress?

Yes. Members of Congress pay close attention to the views of their constituents. While they may have established positions on major national issues, many are open to learning more about conditions like myotonic dystrophy and the needs of the communities affected.

Your voice could help educate an elected official, build a new relationship, or even inspire a long-term champion for DM research and related policy goals.

Kayla Vittek Memorial Award for Outstanding Community Advocate

Kayla Vittek lived with congenital myotonic dystrophy (CDM) and used her voice to create change. In 2014, Kayla and her mother, Lisa Harvey-Duren, testified before the U.S. Senate Health, Education, Labor, and Pensions Committee in support of reauthorizing the MD-CARE Act. The legislation, which expanded federal support for muscular dystrophy research and care, was signed into law later that year.

MDF established the Kayla Vittek Memorial Award for Outstanding Community Advocate in 2019 to honor Kayla’s legacy. The award recognizes community members who raise awareness, advocate for research and resources, and help create a stronger future for people living with DM and their families.

2025 - Beth Feigenblatt

6th Annual Award Recipient

Beth Feigenblatt is an MDF Awareness Ambassador and facilitator for the Florida Regional Support Group. After her husband and three sons were diagnosed with DM1 in 2018, she became a dedicated advocate and source of support for families in Florida and nationwide. Her leadership helps raise awareness, strengthen community connections, and ensure that the experiences of people living with DM and their families are heard.

Watch Beth Feigenblatt receive the award!

2024 - No Award Presented

The award was not presented in 2024, when MDF held Regional Conferences in place of its Annual Conference.

2023 - Rebecca Coplin

5th Annual Award Recipient

After her family’s diagnosis in 2018, Rebecca Coplin began advocating for stronger policies and increased DM research funding at the state and federal levels. She has volunteered with MDF since 2020, contributing as a resource reviewer, Department of Defense grant reviewer, National Advocacy Committee member, and Oregon State Captain for MDF’s 2023 Advocacy Day, which she also helped organize.

Watch Rebecca Coplin receive the award!

2022 - Emily Jones

4th Annual Award Recipient

Emily Jones has turned her family’s experience with DM into sustained community and federal advocacy. She co-facilitates the Finger Lakes and Upstate New York Regional Support Group, has advocated on Capitol Hill for DM research funding, and became a consumer reviewer for the Department of Defense Peer Reviewed Medical Research Program in 2019.

Watch Emily Jones receive the award!

2021 - Alexandra LeBoeuf

3rd Annual Award Recipient

Alexandra LeBoeuf is an artist and advocate living with juvenile-onset DM1. Her design won the International Myotonic Dystrophy Awareness Day logo contest after receiving the majority of hundreds of votes from more than 22 countries. The logo is now used around the world to raise awareness, reflecting Alexandra’s creativity and commitment to the DM community.

Watch Alexandra LeBoeuf receive the award!

2020 - Suzette Ison

2nd Annual Award Recipient

Suzette Ison is a registered nurse, lifelong DM advocate, and mother of a son living with DM1. She and Ted Salwin started the Indiana Support Group in 2005 and later joined MDF after its founding. Suzette has also served as a Department of Defense grant reviewer, bringing both professional knowledge and family experience to advocacy for DM research.

Watch Suzette Ison receive the award!

2019 - Tim Haylon

1st Annual Award Recipient

Tim Haylon became the first MDF advocate to testify before the House Appropriations Committee in 2019, urging increased National Institutes of Health funding for DM research. His testimony helped advance congressional language encouraging NIH to make DM research a higher priority. Tim also led the Worcester-area support group and raised funds to support DM research.

Read Tim Haylon’s story!

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