Well, 2020 wasn’t what we expected. . . I am sure glad we were able to hold our NFXF Advocacy Day 2020 in late February before the world halted. But, the Fragile X community does what it does best – rise up to meet unexpected challenges. NFXF Advocacy continues with new challenges, but new opportunities too.

I saw many of you at the NFXF International Fragile X Conference Virtual Series after we had to cancel the in-person conference in Orlando. And many of you attended virtual advocacy meetings with your members of Congress in August. Rep. Eliot Engel, our long-time co-chair of the Fragile X Caucus lost his primary election, but one door closes, and another opens.

Along those lines, I am excited that Rep. Joe Courtney of Connecticut has graciously agreed to assume the reigns as the Democratic co-chair of the Fragile X Caucus. Joe and I served together in the House, and I know he will work hard, and in a bipartisan way, for all Fragile X families. Partnered with Rep. Chris Smith of New Jersey and the dozens of members of the Caucus, we have natural champions lined up for 2021.

As of the writing of this note, Congress has not wrapped up their work for the year, but our priorities are poised for success, again:

  • The Senate, once again, included Fragile X as an authorized research area for DOD medical research and its inclusion in the final legislation is very likely.
  • Congress provided $2M for the Fragile X program at the CDC, which funds FORWARD and other research and awareness programs.
  • NIH funding is up again – making more funds available for peer-reviewed Fragile X research.
  • Temporary expanded access to telehealth is expected to be included in any pandemic-relief legislation.

As 2020 ends and we enter 2021, the NFXF Advocacy program is ready to hit it head on, turning challenges into opportunities.

In-person trips to DC are critical for advocacy, even in this new normal, but that just will not be possible this February and we are planning a virtual Advocacy Day 2021. We hope this helps expand our advocacy reach by allowing families who are not able to travel to DC to participate. New advocates will open doors to new offices. The event will be held on Wednesday, February 24, 2021. This date was chosen to maximize the availability of the members of Congress and to ensure our research funding requests are received well before the deadlines of the Appropriations Committees.

I hope you can join us this year. You can learn more and register now here.

The NFXF Advocacy program is, dollar-for-dollar, the best return-on-investment we make. Just looking at research, hundreds of millions of dollars have been invested by the federal government in Fragile X research, thanks to the NFXF Advocacy program. And that does not even begin to touch on awareness with policy makers and influencers and legislation that opens doors for better futures, like the ABLE Act. I know that many of you want to give more to help with advocacy. If you can, please consider donating today with a one-time gift or setting up a monthly gift of $10 or more.

Change happens in Washington when people come together. NFXF Advocates have come together for nearly 20 years, whether in-person, writing letters, phone calls, emails, or donating to the important work. I hope we can count on you in 2021!

I wish each of you the best of the holiday season.

Author Gregg Harper

Gregg Harper
Gregg is a Fragile X dad to Livingston and is an NFXF team member, assisting with our advocacy efforts. He has long advocated for Fragile X, notably during his five terms representing Mississippi’s 3rd Congressional District. During his time in Congress, he served as a member of the influential House Committee on Energy and Commerce which has jurisdiction over a broad swath of the economy including healthcare, energy, transportation, and telecommunications. During his time in Congress, most of his colleagues had an opportunity to meet Livingston and be introduced to Fragile X. In 2010, Gregg established the Congressional Internship Program for Individuals with Intellectual Disabilities. It is a unique program designed to give students with varying intellectual disabilities an opportunity to gain Congressional work experience. Upon his retirement, the name was changed to the Gregg and Livingston Harper Congressional Internship Program for Individuals with Intellectual Disabilities.