ACTION THROUGH ADVOCACY!
Rare Disease Day will be recognized on February 28, 2023 and celebrations are currently underway. Below is an amazing list of events, throughout the world, that you can participate in to help raise awareness of rare disease in general, and FA specifically! Moreover, sharing your experience is the key to lawmakers understanding FA, and paves the road to legislative actions that can expedite treatments. Don’t let this Rare Disease Day pass without being part of the conversation!
The FA community has witnessed the impact of their advocacy in many ways, as detailed recently in FARA’s December Advocacy Newsletter, but none are as demonstrative as the work done regarding the Congressionally Directed Medical Research Program (CDMRP). The CDMRP is a great example of how the FA community created action through advocacy.
Each year, during the budget cycle, the US Congress selects conditions eligible for this grant program. The process to get on the list starts when a Congressional Member receives an “appropriation request” from a constituent. Basically, someone needs to ask for it! Each Member then reviews the appropriations requests they receive and decides which ones to forward on to the appropriation committee for further consideration. FA community stakeholders throughout the US, working in collaboration with FARA and the National Ataxia Foundation (NAF), not only made the request but also followed up through meetings, emails and calls to explain the relevance of FA to the goals of the CDMRP program as well as the potential benefits of investing in FA research.
The result: FA was added to the CDMRP in Fiscal Year (FY) 22, resulting in six FA researchers being recommended for funding totaling over $14 million! These grants are a direct result of the amazing advocacy done by this community!
Let’s keep the momentum going in 2023! There are many great Rare Disease Day events listed below. Pick one that works for you and start your year of FA advocacy!