Advocating for myotonic dystrophy research, resources, and inclusion. Through this panel discussion you will:
- Learn about the past, present and future of MDF’s research advocacy plans and how you can help increase federal funding for DM research.
- Get an insider perspective from a congressional staff person on what works and doesn’t work when you lobby Congress for increased research funding and other health care priorities.
- Understand from a DM consumer reviewer how federal agencies like the Department of Defense PRMRP allocate research funds to award grants to fund DM research.
Moderated by Kevin Brennan of Bluebird Strategies. Panelists include Dana Richter, a Senior Policy Advisor for Senator Shelley Moore Capito (WV) and DM Community advocates and PRMRP reviewers Suzette Ison, RN and Suzanne Perkins, PhD.
Presented during the Community's Choice Track at the MDF 2020 Virtual Conference.
About the presenters:
Kevin Brennan is a principal at Bluebird Strategies in Washington, D.C. and has more than two decades of political and policy experience. He served as chief of staff to U.S. Representative Rosa DeLauro (D-CT) and legislative director to U.S. Senator Sherrod Brown (D-OH). He also led the Arthritis Foundation’s Washington, D.C. office and directed alliance development and advocacy for Amgen’s inflammation business unit. He guides the comprehensive advocacy platform development and implementation for the Myotonic Dystrophy Foundation. He was diagnosed with psoriatic arthritis at age 15 and serves on the Arthritis Foundation’s national advocacy board.
Dana Richter is a Senior Policy Advisor for Senator Shelley Moore Capito (WV) with responsibility for issues within the jurisdiction of the HELP Committee and Finance Committee. Prior to her current position, Ms. Richter was Director of Government Relations for the National Breast Cancer Coalition. She previously served as Senior Legislative Assistant for former Representative Frank LoBiondo (NJ-02) with responsibility for issues including health care and education. Ms. Richter has a Bachelor of Arts degree and a law degree from the University of Alabama.
Suzette Ison, RN, CMCN
Suzette Ison is the Support Group Co-Facilitator alongside Ted Salwin for Indianapolis, Indiana. She is a Myotonic Dystrophy Advocate for life and a Registered Nurse, CMCN. Suzette lives in Morristown, Indiana with her 26 year old son, BillyDean Ison, who was diagnosed with DM1 in 2004. Ted and Suzette started the Indiana Support Group in 2005, then joined the Myotonic Dystrophy Foundation when it was founded in 2007. Suzette also has two daughters, Ashley (Joe) and Chelsea (Josh) and 5 grandchildren.
Suzanne Perkins, PhD
Suzanne Perkins is a cognitive neuroscientist at the University of Michigan. She started the Michigan support group two years after her daughter’s diagnosis with DM1. After her daughter was diagnosed at 16, Suzanne decided to use her science background to study anything she can about the disease. Suzanne found the Myotonic Dystrophy Foundation website and attended her first conference in 2017 with her two kids. She has since been involved in advocacy through Rare Disease Day at the Michigan State Capital and through working with her senators to continue the funding of DM as a priority area for the Defense Department Peer-Reviewed Medical Research Program. Suzanne has also served as a peer reviewer on behalf of MDF.