March 5-6, 2018
On National Fragile X Foundation Advocacy Day, held every March, members of the Fragile X community descend on Capitol Hill to relate their stories about Fragile X-associated Disorders, their families, and policies that support Fragile X families, such as health insurance, research at the NIH and DOD, research and public health programs at CDC, ABLE accounts for savings, facilitating the use of potential new drugs for treatments and a cure, and other items.
This is your chance to talk to your members of Congress about Fragile X, emphasize the challenges, and underscore the opportunities that can be created. Your personal visit from home will have a positive impact, even if you don’t always agree on the policies.
NFXF’s goal in our advocacy efforts is to improve on what we have today. We advocate for research and awareness funding because the federal government’s investment, currently around $40M/year, is the bulk of research into treatments and a cure for Fragile X. We advocate for drug research policies and incentives that encourage private investment into research for the relatively small market of Fragile X. And, we advocate for providing greater opportunities for those living Fragile X.
Registration is $25 per person 12 years of age and older.
Important Dates & Times
- Training – Monday, March 5, 1:30-5:30 PM at the hotel.
- Monday night reception for registered advocates – Monday, March 5, after training at the hotel.
- NFXF Advocacy Day on Capitol Hill – Tuesday, March 6, 6:30 AM – 5 PM.