As always, the NFXF is closely monitoring developments in Washington, DC. Our watch list includes Cabinet appointees under consideration, changes to Medicaid, the ACA repeal and replacement effort and the protection of current funding streams for Fragile X research and programming (NIH, CDC, DOD). The consolidation of power among both Houses of Congress and the Presidency, along with many new Members of Congress who likely know little about Fragile X, present both significant challenges and opportunities.
The singular best way for members of our community to meet these challenges and take full advantage of these opportunities is to get involved.
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 1. 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.
Here’s the link. Register now. It’s time to get in the game. We need you.
Think about the reason why NFXF Conferences are the life-changing positive experiences that they are. It’s because of the instant unity that comes about when folks from all walks of life and all corners of the globe share the bond of Fragile X. Lifelong friendships are made and each of our life’s journey with all that Fragile X takes and gives every day are made ever so much easier by the sweet support we provide to each other.
It’s all hands on deck, folks!
Author
Jeffrey Cohen
is the NFXF’s director of public policy and government affairs. He has previously served as a member of the NFXF Board of Directors as well as the interim executive director of the NFXF. Jeffrey has two children living with FXS who are successfully transitioning into independent and productive adults. Jeffrey holds degrees in business administration and law.