Fragile X Advocacy

We actively advocate in Congress for Fragile X research funding, and policies that facilitate treatment development and create opportunities for individuals with intellectual and developmental disabilities.

Fragile X Advocacy

We actively advocate in Congress for Fragile X research funding, and policies that facilitate drug and treatment development and create opportunities for individuals with intellectual and developmental disabilities.

Advocacy is key to support the mission of the NFXF to serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.

Essential to advocacy success is the participation of parents, siblings, self-advocates, friends, medical providers, and researchers from the Fragile X community. 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 needle for more research funding and policies that help families impacted by Fragile X have a better life.

New to advocacy? Need a refresher on the terminology? Our partner, the Everylife Foundation, has a comprehensive glossary of policy and advocacy terms you can use.

You make an impact

Advocacy Day

NFXF Advocacy Day 2024 

In-person training is on the afternoon of Monday, February 26 and the in-person meetings on Capitol Hill are Tuesday, February 27 (NFXF Advocacy Day). Registration available late 2023.

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

The pillar of our Advocacy work 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.

It is easy to think your voice doesn’t matter — it does. Voices from home are the loudest! They know you are a voter. Showing up, telling your story, educating them, and showing them practical ways they can help is what makes a difference!

What does participation look like?

We take care of all of the details! You can expect:

  • Training: We will have a combination of mandatory online self-paced training ahead of time and group training/preparation in person at the hotel on the afternoon of Monday, February 26. We will also be hosting a virtual Zoom meeting earlier in the month of February for new or returning advocates.
  • 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. Plan to be in-person for your meetings.

The bottom line? Don’t be nervous — we will help you each step of the way.

Advocacy Day 2024

In-person Tuesday, February 27

Agenda

Monday, February 26, 2024: Afternoon training

Tuesday, February 27, 2024: Meetings at Capitol Hill

Hotel: Hilton Arlington Towers

Register to Attend Advocacy Day 2024

Scholarships

Scholarship applications are being accepted for individuals, families, self-advocates, or siblings who have not previously attended a NFXF Advocacy Day in Washington, D.C. or advocates who might not otherwise be able to attend due to limited financial resources. Deadline to apply, has passed. Please email advocacy@fragilex.org with any questions. 

Learn More

Families, caregivers, self-advocates, doctors, researchers — you are what moves the needle on Capitol Hill.

Questions? Please email the NFXF Team at advocacy@fragilex.org

What We’ve Accomplished

Patient models EEG sensors

Research

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

Ensuring successful Fragile X research is a multi-faceted approach that includes 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 $500 million - much of which is attributed to the work of NFXF Advocates. Specifically:

  • Over $500 million in Fragile X research between the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense (DOD).
    • CDC: $2M/year, which funds the FORWARD research program
    • NIH: $68M in active awards specific to FMR1-related conditions and disorders
    • Over $20M in grants through the Department of Defense (DOD) program since 2010
  • 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.

We have also supported:

  • Friends of NICHD Letter: Requesting continued support of NIH and NICHD funding.
  • The Defense Health Research Consortium: Requesting continued funding of the Congressionally Directed Medical Research Program at the Department of Defense.
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. Each individual is unique, with 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, the importance of giving families opportunities to save additional resources, and how essential it is for individuals to find 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.
  • Charlotte Woodward Organ Transplant Discrimination Prevention Act. Prohibiting discrimination on the basis of mental or physical disability in cases of organ transplants.
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.

NFXF Advocates have been very successful at educating Congress! Visiting offices, sharing personal stories, introducing Congress to self-advocates, and more demonstrates to Fragile X is real, it affects their constituents, and there are ways they can help. This work and our asks are continuous, including :

  • 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.

Legislation We’re Currently Supporting

BENEFIT Act of 2023

Requires the Food and Drug Administration (FDA) to consider relevant patient experience data in the risk-benefit assessment framework used in the process of approving new drugs.

Learn more from Congress.gov.

Transformation to Competitive Integrated Employment Act

Addresses employment standards for people with disabilities.

Learn more from Congress.gov.

Charlotte Woodward Organ Transplant Discrimination Prevention Act

Prevents the use of a disability to determine a patient’s eligibility for an organ transplant.

Learn more from Congress.gov.

Cameron's Law

Increases the rate of the tax credit for clinical testing expenses for rare diseases or conditions from 25% to 50% (orphan drug tax credit)

Learn more from Congress.gov.

Disability Employment Incentive Act

Expands tax credits and deductions that are available for employers who hire and retain employees with disabilities.

Learn more from the Special Committee on Aging.

KEEP Telehealth Options Act 2023

The Centers for Medicare & Medicaid Services to report on telehealth expansion during the COVID-19 public health emergency and through December 31, 2024.

Learn more from Congress.gov.

How Can You Help?

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.

Learn More

Congressman Harper Re-Introduces the TEAM Act

The three bills which comprised the TEAM Act began and finished the 112th Congress without ever making it to a vote. The package of bills serve the dual function of promoting the training and employment [...]

Your Vote Matters in the Fragile X World

Jeffrey Cohen Director of Government Affairs & Advocacy In case you hadn’t noticed there’s a big election coming up. The upcoming presidential election is sure to have an impact on our country, your locale [...]

Supreme Court Takes Center Stage

Jeffrey Cohen Director of Government Affairs & Advocacy During the week of June 25th I was scheduled to be in DC to attend Congressional Hearings on Seclusion and Restraint and to meet with [...]

Last Updated: 1/10/2021