MDF Launches National Advocacy Committee

Published on Wed, 05/24/2023

MDF Launches National Advocacy Committee 
Patients, Caregivers, Physicians, Researchers Leading Advocacy

On March 11th, 2022, the Myotonic Dystrophy Foundation’s new National Advocacy Committee (NAC) held their first meeting to begin executing our 2022 advocacy campaign to increase myotonic dystrophy (DM) awareness, grow DM research funding, and advance policies to accelerate the approval of drugs to treat and eventually cure DM. With the release of the new 2021-24 MDF Strategic Plan, the organization is investing in several exciting new initiatives including advocacy to more deeply engage policymakers and federal agencies. This will be accomplished by growing the number of DM advocates, cultivating stronger relationships with key federal research and health care agencies like the National Institutes of Health (NIH), Food and Drug Administration (FDA), and the Centers for Medicare and Medicaid Services (CMS), and successfully advocating for increased federal research funding.

In building the new NAC, we have invited individuals living with DM1 and DM2, a physician, a researcher, a health care administrator, a veteran, a caregiver, and a support group facilitator to serve. Committee members and the states they represent include Martha Montag Brown (MDF, Vice-Chair) from California, Rebecca Coplin from Oregon, Belen Esparis, MD, from Pennsylvania, Charles Hunt from Georgia, Emily Jones from New York, Mindy Kim from North Carolina, Eric Wang, PhD from Florida, and Rob Besecker from Illinois.

This year, the NAC is setting up several exciting webinars to teach advocates about how to educate your Senators and Representatives about DM and successfully build relationships with them and their staff to win their support for our agenda. Advocates will learn how to schedule a meeting with your member of Congress and their staff either back home or in D.C., the dos and don’ts of a congressional meeting, and how to effectively follow-up after your meeting.

The spring webinar is being designed to prepare advocates for our first ever Myotonic Dystrophy Foundation Advocacy Week on May 2-6th. Advocates from across the country will be meeting virtually with their members of Congress and staff urging them to continue DM federal research funding through the Department of Defense Peer Reviewed Medical Research Program (PRMRP), secure new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP) and initiate a new NIH research effort focused on DM and related repeat expansion diseases. To date through our advocacy efforts, we have secured an additional $7.7 in new DM research projects through the PRMRP program with more grants expected in the coming year.

Over the past several years, MDF and our community have made major progress in our work to improve health care, advance research, and accelerate the drug development pipeline. We have won major victories when the Social Security Administration designated congenital DM as eligible for their compassionate allowance program to more quickly enable individuals to obtain disability benefits including health care coverage and hosted the first ever Patient Focused Drug Development meeting with senior FDA officials to advance drug discovery. The NAC will take the MDF to the next level and with your continued support we will achieve even great successes that will measurably improve the lives of every person living with DM.

Click here to learn more about MDF's advocacy efforts.