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 [...]
This Tuesday, more than 150 National Fragile X Foundation volunteers representing 27 states traveled to Washington, DC for NFXF Advocacy Day. In 130 meetings, our parents, grandparents, siblings, aunts, uncles, cousins, friends, professionals, and - [...]
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 [...]
NFXF advocates are out in force during the August recess to meet with their Members of Congress and staff to raise awareness of Fragile X. They are discussing the public policy priorities of the [...]
You can send the NFXF letter (link) to staff members you have an existing relationship with or deliver it personally to staff or a member of Congress at an upcoming Town Hall or other local event.
June 13, 2017 Dear Members of Congress: The National Fragile X Foundation works to provide support, awareness and research for families with Fragile X. Fragile X (FX) is a group of genetic disorders caused by [...]
The President released his more detailed Fiscal Year 2018 Budget today. You can read it all here. There are items to concern families living with disabilities, such as research and Medicaid funding. [...]
This week, Congress should wrap up the Fiscal Year 2017 appropriations – just seven months into the fiscal year. The agreement includes an additional $2 billion for the NIH, which should translate into more funds available for Fragile X research. It also signals that Congress does not have an appetite to cut NIH funding 30%, as proposed in the President’s Fiscal Year 2018 budget outline.
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 [...]
We are barely three weeks out from our 2017 NFXF Advocacy Day on the Hill and our asks are already becoming more relevant. The President's Fiscal Year 2018 Budget Blueprint was released March 16. This document summarizes, at a high-level, the dollar amounts and initiatives/changes proposed in his budget. It is not his budget – that is expected in May. However, it signals his priorities, which include a funding cut and reorganization at NIH
I am thrilled to be the newest member of the National Fragile X Foundation family. I have been impressed with the Foundation’s work for several years now, as my friends and former colleagues are active members. You, the FX community, possess the key to positive change in people’s lives and in Washington – energy and passion.
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.