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 text

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. For over 20 years, we have gathered in DC in early Spring 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 DC 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 DC.

What does this look like?

  • You receive training and will be provided a mentor if you want extra one-on-one guidance.
  • You receive all of the materials you need.
  • Your meetings are scheduled for you and everything is coordinated with other advocates from your area.

What do you need to do?

  • Be available for your meetings between 9 and 5 ET on Wednesday, February 24.
  • Participate in a live training session from 2-4 ET on Friday, February 19.
  • Be respectful and kind during your meeting.

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

Join Us for Advocacy Day 2021

february calendar with 24 circled
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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.

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 ConferenceWatch on the importance of advocacy and how to do it well. You can now watch his full keynote.

Patient models EEG sensors

Research

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

$400 million

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.
Alec, Jake, Laura, and Jack at Disneyland (Anaheim, Calif.) in 2018.

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.
a couple on the steps of the U.S. Capitol

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?

  • telehealth visit

Help Expand Telehealth Options

The TREAT Act works to resolve this. The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act was introduced in the Senate by Senators Roy Blunt (R-MO) and Chris Murphy (D-CT). The legislation provides temporary licensing reciprocity for health care professionals in good standing during COVID-19 and future national emergencies.

  • Gregg Harper video

NFXF Advocacy in 2021

Gregg Harper, Fragile X dad, former member of Congress for Mississippi's 3rd Congressional district, offers a message to all Fragile X families following the 2020 election, looking forward to NFXF advocacy in 2021.

  • two small chairs, tents, and fire ring

Camping and Fragile X

Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.

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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