With Fall upon us, it is a great time to look back at the hard work of our NFXF Advocates in 2019 and look forward to what comes in 2020. In short, NFXF Advocates have had a very successful year!
Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year:
- Research funding at the National Institutes of Health and the Centers for Disease Control are being fully supported by Congress, once again. Fragile X programs at the CDC have an annual $2M budget provided by Congress, and the NIH is poised, once again, to fund $40M+ in Fragile X research grants. Additionally, they are close to finalizing their Fragile X Strategic Plan to guide their efforts. Once this is complete, they can solicit proposals and fund the next 5 years of Fragile X Research Centers.
- The Senate has included Fragile X back into the authorized research areas for the Department of Defense’s Peer Reviewed Medical Research Program.
- The ACE Kids Act became law. This legislation allows children with “medically complex conditions” and on Medicaid to have a central care coordinator and to access specialists outside of their own state, which is currently not available. Since not every state has Fragile X syndrome specialists, this can be critical to families.
- The Autism CARES Act became law. Don’t be fooled by the title – this legislation covers all developmental disabilities. It funds programs to train current and support more providers for individuals with developmental disabilities. The programs’ authority expired on September 30, so the legislation had to be enacted for them to continue.
I know it is easy to think your voice doesn’t matter in Congress, but nothing could be further from the truth. Members of Congress who are reelected realize that they must listen to and support their constituents. When you go to their offices, either in DC or near your home, you get the priority. Even if they don’t end up agreeing to support our initiatives, you have educated them about Fragile X. And that is a win.
This year, about 120 individuals joined us at NFXF Advocacy Day in DC in February, 71 individuals participated in meetings near their homes during the August recess, and over 300 residents of Illinois and Alabama wrote their Senators to support the DOD research initiative. These all moved the needle for Fragile X families, so thank you!
We can use your help. If you are an advocacy veteran, save the date for NFXF Advocacy Day 2020. It will be Monday, February 24 and Tuesday, February 25, 2020. Registration is coming soon, but if you are a super-planner, you can go ahead and book your room at the Crowne Plaza in Crystal City, VA.
If you are new to advocacy, we are here to help. You don’t need to worry! Join our Facebook group, make sure you are signed up for advocacy e-mail updates, and, if you want to take part in our micro-training this Fall (short, 5 minute tips and lessons to get yourself ready), join here.
I say it all of the time, but I can’t say it enough – the NFXF is successful in our advocacy efforts because of our NFXF Advocates! Join us.