Fragile X Advocacy

Advocating in Congress for Fragile X research funding, policies that facilitate drug and treatment development, and policies that create opportunities for individuals with intellectual and developmental disabilities to lead better lives.

Fragile X Advocacy

Advocating in Congress for Fragile X research funding, policies that facilitate drug and treatment development, and policies that create opportunities for individuals with intellectual and developmental disabilities to lead better lives.

Advocacy is key to support the mission of the NFXF to provide unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure. 

Essential to advocacy success is the participation of Fragile X parents, siblings, self-advocates, friends, medical providers, and researchers. Members of Congress listen to voices from home. They are the loudest, most effective voices and it is critical that you attend meetings with members of Congress and their staff. You don’t have to be eloquent or perfect — you just have to be honest, respectful, and solution-oriented. Your participation moves the need for more research funding and policies that help Fragile X families have a better life.

You make an impact

Advocacy Day

Constituents (aka YOU) connecting with your members of Congress and their staff is THE KEY to our successful advocacy program. You make it possible.

The pillar of the program is Advocacy Day. Every spring, for over 20 years, we gather in Washington, D.C., in a concerted, joint effort to raise awareness of Fragile X in Congress and to ask for research funding and policies that provide the opportunity for a better life for those living with Fragile X.

As you might expect, we are planning a virtual NFXF Advocacy Day for 2021. While gathering in-person in Washington is a fun experience many families look forward to, we hope this option helps expand the number of Fragile X advocates who can participate, especially from states that are much farther from our capital.

What does participation look like?

We take care of all of the pre-planning, including your training:

  • Training: You receive training and will be paired up with a mentor if you want additional one-on-one guidance.
  • Materials: You receive all of the materials you’ll need.
  • Meetings: Your meetings are scheduled for you and everything is coordinated with other advocates from your area.

Join Us for Advocacy Day 2022

Details coming soon!

Research 101 eBook cover

Download Your State’s Fact Sheet

For use on Advocacy Day (or any day), we created these one-pagers to help introduce someone to Fragile X, including the number of affected individuals — constituents — currently residing in each state.

If you’re nervous, you’re not alone. We’re here to help you each step of the way
so sign up and make a difference!

Watch

Gregg Harper represented Mississippi’s 3rd Congressional District in Congress from 2009-2019. He is also a Fragile X dad to Livingston. Now, he works as an NFXF Team member on our advocacy program. He spoke at the 17th NFXF International Fragile X Conference on the importance of advocacy and how to do it well. You can now watch his full keynote.

What We’ve Accomplished

Patient models EEG sensors

Research

$400 million

We advocate for investments by the Federal government in Fragile X research and policies that spur drug development for rare disorders.

Ensuring successful Fragile X research is a multi-faceted approach, including participation from researchers and families, federal policies, and private, institutional, and federal investments. The investment by the federal government over the past two decades has exceeded $400 million – much of which is attributed to the work of NFXF Advocates. Specifically:

  • A robust program at the NIH, funding around $40M/year, including three Fragile X centers.
  • A line item at the CDC for $2M/year, which currently funds the FORWARD research project.
  • Fragile X research funding by the Department of Defense (DOD).
  • A comprehensive National Institutes of Health (NIH) Blueprint to guide research targeting all Fragile X-associated disorders.
  • The Orphan Drug Act to encourage private companies to repurpose drugs approved for other disorders for rare diseases/disorders.
Teens near a fountain laughing side-by-side with their arms around each other

Better Lives

Everyone with an intellectual and developmental disability has the same right to the pursuit of life, liberty, and happiness. We work for policies to make that possible.

We like to say if you have met someone with Fragile X, you have met someone with Fragile X. Every individual is just that – an individual. Each is unique and each has unique needs. Our goal is to promote policies that make better lives possible and give each family an opportunity to choose the path that they feel is best for them. We recognize the importance of social support programs, such as SSDI, Medicaid, and Medicare and the importance of giving families opportunities to save additional resources and individuals to find value in work meaningful to them. Our successes include:

  • ABLE Accounts, which are tax-deferred savings accounts for adults living with disabilities, similar to 529 college savings accounts.
  • The ACE Kids Act to help children on Medicaid with “complex medical conditions,” receive better, coordinated care, including across state lines.
  • The RAISE Act to improve federal, state, and local policies for caregivers of adults.

We have also supported:

  • Continued, increased access to telehealth beyond the pandemic.
  • The HEADS Up Act to make more specialists available under Medicaid and community-based health centers specific to IDD by designating intellectual and developmental as a medically underserved population.
  • Self-driving vehicles to provide another transportation option.
Two women in front of the U.S. capital building

Awareness in Congress

Before a member of Congress can help, they have to know about Fragile X. That is a key component of our advocacy — raising awareness of Fragile X among the policymakers.

And NFXF Advocates have been very successful at this. Visiting offices, sharing your story, introducing them to self-advocates, and more demonstrates to them this is real, it affects their constituents, and this is how they can help. And the work is continuous. In 2021, the work includes:

  • The House Fragile X Caucus. Members of the House can join the Caucus to demonstrate their support of families living with Fragile X. The co-chairs work each year to raise awareness and to support the annual appropriations request for research. The Caucus is co-chaired by one Democrat and one Republican, currently Rep. Joe Courtney (D-CT-2) and Rep. Chris Smith (R-NJ-4).
  • When Gregg Harper served in Congress, he established an internship program in the House for individuals with IDD. The mission was two-fold: give these individuals a chance to serve and raise awareness of IDD among the staff and members. It continues to this day, and at least two individuals with Fragile X have participated, and upon his retirement, was renamed the Gregg and Livingston Harper Internship Program for Individuals with Intellectual Disabilities. Livingston is Gregg’s son and has Fragile X syndrome.

How Can You Help?

Advocacy Update: Budgets, Budgets, and Budgets

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. ...

Advocacy Update: Appropriations and Coalitions

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.

NFXF Advocacy Update: The ABLE Act and More

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 ...

Dan Whiting, Director, Community Impact
Questions?

If you have questions about anything advocacy-related, we’d love to hear from you! You can reach out to Dan Whiting directly, or submit your question or comment through our contact form.

Dan Whiting,
Director, Community Impact
dan@fragilex.org
(202) 747-6203

Last Updated: 1/10/2021