These are exciting times! Medical knowledge of neuromuscular disease is broadening, and children and adults with these diseases are living longer, fuller lives. Research discoveries are leading us to promising treatments. But challenges remain, as many federal agencies are not receiving the funds and resources needed to catalyze change. And, our ever-changing neuromuscular community continues to encounter barriers to accessing necessary resources and supports. In response to rising concerns, MDA is working to accelerate research advances and treatment discovery, while expanding the resources available to those affected by neuromuscular disease so that families can lend their own voices to effect change.
When meeting or communicating with elected officials about issues that matter to you (whether it be public policy or changes to state and/or municipal services for people with disabilities), the following tips for success can help.