While you may be most familiar with our annual NFXF Advocacy Day, our advocacy efforts are an intentional, year-round commitment to relationship-building, policy engagement, and community empowerment. The National Fragile X Foundation (NFXF) works continuously on Capitol Hill and alongside a community of advocates to ensure the Fragile X community has an active, informed voice wherever and whenever decisions on research, policy, and disability rights are made.
Key Takeaways
- Year-Round Engagement: Beyond our annual Advocacy Day, NFXF engages in continuous outreach, participating in briefings, committee testimony, and ongoing dialogue with federal agencies and policymakers.
- Broad Policy Scope: Recent efforts focused on critical priorities, including federal research funding, Medicaid, Home and Community-Based Services (HCBS), Supplemental Security Income (SSI), and family caregiving initiatives.
- Cross-Collaboration: NFXF works alongside broader rare disease and disability organizations — such as attending the Newborn Screening Bootcamp and caregiving briefings — to stay ahead of policy changes that impact families even when Fragile X isn’t explicitly named.
- Thoughtful, Fact-Based Leadership: Advocacy requires evaluating complex policy details beyond the headlines, consulting experts, and providing nonpartisan, factual information.
- Community Empowerment: We translate complex policy updates into practical guidance, empowering individuals and families to advocate effectively at the federal, state, and local levels.
For us, advocacy means being in the room when conversations happen that may shape policies, programs, research, or opportunities for our community. It means listening, learning, asking questions, and making sure the voice of the Fragile X community is part of the conversation.
It also means building relationships before there is an immediate ask. Relationships with policymakers, federal agencies, researchers, advocates, and organizations don’t happen in a single meeting. They grow through ongoing conversations, follow-up calls, briefings, emails, introductions, and staying engaged over time.
A Good Example of What That Looks Like
The NFXF returned to Capitol Hill in September 2026 to meet with Members of Congress and congressional staff. We discussed issues important to the Fragile X community, including changes involving:
- The Department of Education and Health and Human Services (HHS)
- Medicaid
- Home and Community-Based Services (HCBS)
- Supplemental Security Income (SSI)
- Disability rights and community living
- Continued federal research funding for Fragile X-associated conditions
But Capitol Hill was only part of the week.
We also participated in a congressional briefing on the Family Caregiving Compendium, an interactive resource examining federal policy options related to family caregiving and long-term services and supports.
Caregiving is a major concern for the Fragile X community, and conversations about caregiver supports, Medicaid, HCBS, workplace policies, and other areas can affect our community even when Fragile X isn’t specifically mentioned.
We also attended the RARE Foundation (formerly EveryLife Foundation) Newborn Screening Bootcamp, where we learned more about emerging approaches to newborn and genomic screening, as well as the opportunities and limitations of programs currently being developed and piloted. We heard from professionals across the field, including representatives from:
- NIH National Center for Advancing Translational Sciences (NCATS)
- Health Resources and Services Administration (HRSA)
- Centers for Disease Control and Prevention (CDC)
- Researchers and other advocates
Meeting with and joining forces with these broader groups ensures Fragile X is never left out of the big conversations and helps us shape policies that fit our families’ daily lives.
Responsible Advocacy Takes More Than Showing Up
The NFXF approaches our role in advocating for the Fragile X community with great intention and care. That responsibility means listening, learning, asking questions, and understanding an issue’s details and implications before deciding how to respond. It means consulting with congressional offices we work closely with, partners across the broader disability and rare disease communities, and others with relevant expertise and perspectives.
Policy developments can generate questions and concerns, but understanding what they mean requires looking beyond initial headlines to examine the scope of a change and what is known versus what remains uncertain. We work hard to provide factual, nonpartisan information about issues that may affect our community.
Sometimes, that means taking the time to gather information from many varied sources, ask questions, and determine where and how our voice can make a difference. This work may not always be visible, but it is an important part of making sure our advocacy is informed, accurate, and focused on the needs of the Fragile X community.
Our Role Doesn’t Stop With Being In The Room
Part of our responsibility is bringing what we learn back to the Fragile X community. We work to provide factual, non-partisan information about policies and issues that may affect individuals and families living with Fragile X-associated conditions. We also provide information and practical guidance to help our community advocate for themselves and for Fragile X. That may mean contacting Members of Congress on Capitol Hill, in their local offices, by phone, or by email. It may also mean helping our community recognize when an issue calls for engagement with state or local elected officials.
We are grateful to the advocates who share their experiences and help policymakers understand what these issues mean for individuals and families living with Fragile X. Your stories bring the real-life impact of policies into focus and help ensure our community’s needs are heard.
Throughout the year, the NFXF submits written testimony to congressional committees and subcommittees, participates in briefings and roundtable discussions, meets with congressional offices and federal partners, joins calls, follows emerging policy and research issues, and continues to foster the relationships that make future conversations possible.
Advocacy is a continuous journey built on steady engagement, nonpartisan research, and authentic community stories. While much of this effort happens behind the scenes, every meeting, submission, and conversation ensures that the Fragile X community remains heard, represented, and prioritized.
As policies evolve, NFXF will continue to lead the way — keeping you informed and empowered every step of the way.
If you have questions or want to share your real-life stories and experiences, please reach out to us at advocacy@fragilex.org.
