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 [...]
In March, over 150 NFXF Advocates descended onto Capitol Hill to once again advocate for Fragile X and raise awareness among Congress. A top ask is to join efforts to support Fragile X programs at [...]
There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]
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 [...]
Last year, the National Institutes of Health (NIH) funded $46 million in Fragile X research, an amount that has trended upwards in the past few years. Over the years, they have funded hundreds of millions [...]
Last night, Congress passed the RAISE Family Caregivers Act. The bill, introduced by Fragile X Caucus co-chair and parent, Rep. Gregg Harper, directs the Secretary of HHS to work with stakeholders from state and local [...]
Health Insurance, Medicaid, and SSI/SSDI These are three issues that aren’t going away. They are especially critical for Fragile X families and other families with disabilities, lifelong care needs, etc. To help your members [...]
A copy of a letter sent to Congress on June 13, 2017.
Congress is moving forward on our two key asks: Reps. Harper and Engel have sent their cosigned letter to the House Appropriations Committee asking for support for research at [...]
The 115th Congress is just getting underway and there is no better time to start making new friends. One of the best ways to do that is by attending the 14th annual NFXF Advocacy Day coming up on February 28 and March 1st. We need both seasoned advocates and first timers to share the load. NFXF advocates have consistently proven that participating in the process, telling your stories and making your voices heard makes all the difference in the world.
We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.
On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X.
Today, Congressional leaders released the text of the omnibus spending bill that will be debated and hopefully passed before Congress adjourns for the year. The omnibus bill funds all 12 appropriations bills, including THE one [...]
After eight long years urging passage by the US House and Senate, the ABLE Act was signed into law by President Obama in December of 2014. But ten months later, no one has been able [...]
Updates on Appropriations The House Appropriations Committee will mark up the '16 Labor-HHS-E spending bill that was passed by the subcommittee last week. The bill includes $153 billion in discretionary funding, which is a $3.7 [...]
