The National Fragile X Foundation (NFXF) is proud to announce that it has been awarded a $1 million grant from the Centers for Disease Control and Prevention (CDC) for a new initiative titled “Component C: Creating Resources, Support, and Strengthening Capacity for People with FXS.”
This significant investment represents an exciting step forward for the Fragile X community and reinforces the importance of ensuring that individuals with Fragile X syndrome (FXS), their families, and the professionals who support them have access to high-quality, evidence-based information and resources.
Advancing Support for the Fragile X Community
This initiative aims to improve access to evidence-based information, support, and services for people with FXS, their families, and their communities. The project will also strengthen healthcare providers across the United States to better support and care for individuals with FXS.
Over the next five years, the NFXF will continue its development of practical resources designed to meet the evolving needs of the Fragile X community. New and updated tools, programs and resources will be evaluated and improved based on feedback and input from that community including parents, self-advocates and professionals. The initiative will build on our 40 years of work, promoting broader use of evidence-based FXS information among individuals with FXS, caregivers, family members, community partners, and healthcare providers nationwide.
Turning Research into Action
A key component of the project is translating important findings from the CDC-funded FORWARD and FORWARD-MARCH studies into practical, easy-to-use educational resources and tools.
By transforming research into meaningful action, we will help ensure that valuable knowledge reaches the people who need it most. Activities throughout the project will include:
- Conducting needs assessments to better understand community priorities and gaps in support
- Creating new educational content and updating existing resources
- Disseminating information through multiple communication channels to families and healthcare providers
- Gathering ongoing feedback through evaluation opportunities
- Continuously improving materials based on community input and emerging evidence
Strengthening Healthcare Provider Capacity: In addition to supporting families and individuals with FXS, this initiative focuses on strengthening healthcare provider capacity nationwide.
The project will promote the use of evidence-based information throughout Fragile X specialty clinics and among the many healthcare, therapeutic, and educational professionals who work with individuals with FXS and their families. By increasing awareness and access to trusted resources, like continuing education credits, we aim to help providers deliver more informed, coordinated, and effective care. Read the original grant opportunity.
Looking Toward Lasting Impact
Expected outcomes of the grant include:
- Stronger partnerships across the Fragile X community
- Increased use of FXS data to guide public health action
- Greater awareness of available resources and services
- Enhanced support, improved health, and quality of life for individuals with FXS and their families
These efforts will help build a stronger, more connected Fragile X community while advancing the understanding and implementation of best practices in Fragile X care.
We Need You
Most importantly, this project is about listening, learning, and responding to your needs as the people at the heart of the Fragile X community.
Families, self-advocates, caregivers, healthcare providers, and community partners will play an essential role in shaping these efforts. Your experiences and insights will help identify gaps, inform solutions, and guide the development of resources that truly meet community needs.
As this exciting work begins, watch for upcoming opportunities to provide feedback, participate in assessments, and contribute to the project.
Together, we can help ensure that every person with FXS and every family affected by FXS has access to the information, support, and services they need to thrive.
The NFXF is honored to partner with the CDC on this important initiative and looks forward to working alongside the Fragile X community to create lasting, meaningful impact for years to come.
