Several years ago, NFXF Advocates were successful in adding Fragile X research to the Department of Defense's Congressional Directed Medical Research Program (CDMRP) list of authorized research areas. Each year, the NFXF advocates for continuation [...]
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Thanks to the hard work of NFXF Advocates years ago, Fragile X is one of the authorized research areas at the Department of Defense's Congressionally Directed Medical Research Program (DOD CDMRP). Millions of dollars in [...]
On National Fragile X Foundation leads an advocacy program to advance research funding for Fragile X and programs to provide better lives and opportunities for individuals living with Fragile X and other intellectual and [...]
NFXF Advocacy Day The National Fragile X Foundation leads an advocacy program to advance research funding for Fragile X and programs to provide better lives and opportunities for individuals living with Fragile X and other [...]
Advocacy Day 2019 is done, and by all measures, it was another success. Fragile X advocates visited 56 Senate offices and 61 House offices – all of their home districts. We had fun, connected with [...]
For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.
Meet Our Team Linda has been a member of the NFXF team since 2004. She has over 25 years of experience in non-profit programs, operations management, board and volunteer development. She [...]
In preparation for the National Fragile X Foundation's Advocacy Day 2017, we are publishing initial details on our "asks" for this year's meetings. It is our goal to provide each advocate ample time to prepare, in an effort to ease anxiety related to the day. Our asks, as always, are bipartisan and reflect the best interests of our community. Personal politics have no place in Advocacy Day so we hope each of you will come to Washington, DC prepared to share your story and fight for the needs of all those living with Fragile X.
ABLE Act hits all-time high 380 co-sponsors, appropriation injects $150 million into DOD and PRMRP, NFXF asked to nominate additional peer reviews to the PRMRP, Rep. Klein still refuses to allow debate on KASS, and [...]
"Public Policy Is for People!" reflects a fundamental truth about the legislative advocacy efforts we pursue at the National Fragile X Foundation. Yes, "public policy" may sound like a forgettable chapter in your high school [...]