Advocate for Myotonic Dystrophy Research Funding - Rare Disease Day 2024

Click here to Contact your Representatives in a single easy step: https://www.votervoice.net/Myotonic/C...

Learn more about MDF's Advocacy Priorities and our new "Action Center"!

In this webinar, MDF' Washington, D.C. based advocacy consultant, Kevin Brennan, leads a panel discussion with MDF advocates (Mark Planco, Belen Esparis, and Haley Martinelli) about strategies for raising awareness and driving US federal funding to DM research. He also unveils our plans to secure $10 million in new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP).

Make your voice heard at: https://www.votervoice.net/Myotonic/C...

Join MDF Advocates across the U.S. who are making their voices heard in Congress!

Please email your Senators and Representatives asking them to support $10 million in new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP)! In a few weeks, MDF Advocates will also be asking Senators to make DM eligible for research awards under the Senate initiated Peer Reviewed Medical Research Program (PRMRP). If we are successful, this will be the 8th year in a row DM has been included in PRMRP which has awarded $24 million in new DM research grants since 2018.

Learn more about MDF's ongoing advocacy efforts at https://www.myotonic.org/myotonic-dys...

00:00 - Introduction
03:31 - What is Rare Disease Day?
04:23 - MDF 2024 Advocacy Priorities
06:37 - MDF Research Advocacy in Action
11:18 - What is Grassroots Advocacy?
13:16 - The Congressional Budget Process
16:26 - The New MDF Action Center
22:01 - New Advocacy Tactics
24:54 - MDF Advocate: Mark Planco
28:02 - MDF Advocate: Belen Esparis
35:47 - MDF Advocate: Haley Martinelli
41:00 - Q&A Discussion
56:44 - Key Takeaways & Final Charge