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Advocacy

AdvocacyNFXF2025-01-06T20:48:02-05:00

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 — t o 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

Join us for NFXF Advocacy Day 2025

Mark your calendars for NFXF Advocacy Day this February 24-25, 2025! Families, self-advocates, caregivers, siblings, doctors, and researchers will come together to advocate for the entire Fragile X community and work toward our collective goals.

Sharing personal stories about Fragile X is an empowering and effective way to raise awareness, educate, and advocate for continued funding and supportive policies. It can drive change, inspire compassion, understanding, and action that ultimately benefits the entire Fragile X community.

Please note that this event is focused on shared priorities and policy initiatives. As a non-partisan organization, we aim to promote a unified message that supports the needs of the entire Fragile X community. Together, we can make a meaningful difference!

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

What Does Participation Look like?

We take care of all of the details! Here’s what you can expect:

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

Advocacy Day 2025

February 24-25

Registration Now Open

Deadline: February 7, 2025

Agenda

Monday, February 24: Afternoon training and reception
Tuesday, February 25: Meetings at Capitol Hill

Specific times and details will be shared closer to the event.

Scholarship Applications

The deadline to apply for the 2025 Advocacy Day has passed.

Book Your Hotel Room

Hilton Arlington Towers
950 N Stafford St., Arlington, VA 22203

Rate: $189 + fees/taxes
Special Room Rate Deadline: January 25, 2025*

*Or until the group room block the NFXF has acquired is sold out, whichever comes first. Any cancellation requests must be done 72 hours prior to your arrival date to avoid losing your deposit(s).

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:

We have also supported:

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:

We have also supported:

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 :

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.

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?

Advocacy Day

Join us each spring for Advocacy Day. We’ve been at it for more than 20 years and can tell you this is one of the most important ways you can help make a difference. In 2024, we’re planning on hosting an in-person Advocacy Day. Additional details will be shared late 2023!

Join our private Facebook group for advocates. It's where we all keep up on the latest news, share knowledge and experiences, and coordinate on advocacy. And we have fun!

Join our group

Stay up-to-date via email. Make sure you have the latest on our Advocacy program by signing up for our advocacy emails, including educational information, updates, and requests to take action.

Get Our Advocacy Emails

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