The Myocarditis Foundation attended the Rare Disease Legislation Advocates (RDLA) annual Conference and Lobby Day in Washington D.C.
This conference was open to rare disease organizations and their families to learn more about the legislative process and options organizations have to get their voice heard on Capitol Hill.
Collectively, the Myocarditis Foundation was able to meet with fourteen different congressmen (or their staff) from Minnesota, Pennsylvania, and Texas. The Foundation and two families created good contacts in these offices and are now in the beginning stages of creating legislation to bring funding to research and to ensure public awareness and action is taken to diagnose and prevent myocarditis related sudden death.
The two days following the RDLA conference and lobby day, the Myocarditis Foundation attended the National Institute of Health’s Rare Disease Day in Bethesda, MD. This was an excellent opportunity for the Myocarditis Foundation to expose others to myocarditis, what the disease does, and the reason we need to seek funding at a national level.
The Myocarditis Foundation encourages each and every family to contact their local representative and talk with them about the experience you had with myocarditis, why it is important to continue funding medical research at a federal level, and why we need large public awareness campaigns to expose myocarditis in an effort to prevent sudden death in young, otherwise healthy individuals.
In the meantime, we want to encourage the efforts of a myocarditis family in their petition to develop a bill for funding of the Myocarditis Foundation for research and awareness: Funding for the Myocarditis Foundation Research and Awareness
We also are publicly supporting the HEARTS Bill, being introduced to he house and the senate and encourage you to talk to your local congressman to support this important bill as well: Bill-HR-565.
Thank you to the families that came to the RDLA Conference and the NIH Rare Disease Day and to the families that continue to support the Myocarditis Foundation in our awareness efforts. Every bit of exposure and awareness helps to save more lives.
Contact the Myocarditis Foundation if you would like any more information about these events.