Meet the 2024 NFXF Summer Scholars, Emily Peery, Thomas Christensen, Emily Timm, and Manasi Inamdar, and see their winning presentations.
The Belonging Project aims to intentionally extend our reach to underserved and underrepresented communities across the United States. We have 2025 updates from three Fragile X clinics and our belongingness survey, and we will keep you updated as we continue to move forward.
Moshi Moshi is hosting their 6th annual fundraiser to support the NFXF during Fragile X Awareness Month in July.
One of our initiatives aims to intentionally extend our reach to underserved communities across the United States to understand better the challenges of diagnosis and treatment faced by Black, Hispanic, and Native American communities and the providers who serve them.
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their 10th Annual Bike To X Out Fragile X on Saturday, June 7, 2025, in Des Moines, Iowa.
Our 2024 NFXF awards are in! Learn more about each award and the respective awardees.
Congratulations to our 2024 Junior Investigators! We are SO excited to have such brilliant minds in the Fragile X field. The NFXF is proud to support these Junior Investigators and build the next generation of Fragile X experts.
Highlighting the Fragile X Clinic at the Michigan Medicine Fragile X clinic , a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC).
So many people — volunteers, team members, donors, advocates, self-advocates, clinicians and clinic teams, researchers, therapists, educators, counselors, advisors, and others — over the past 40 years have helped make the National Fragile X Foundation what it is today!
The National Fragile X Foundation has been advocating for research funding and for laws and regulations sensitive to the needs of the Fragile X community, for more than 25 years.
The NFXF has played a key role in the global community of Fragile X families and professionals throughout the entirety of its existence, including working in partnership and alongside with many other Fragile X patient advocacy organizations, clinicians, and researchers.
The NFXF has supported, facilitated, and coordinated research throughout its 40-year history! Here are just some of the highlights.
The Greater Chicago Fragile X chapter held their “X Strides with Greater Chicago” event on July 13 in Glenview, Illinois. More than 50 families and caregivers participated including heading to the park splash pad to cool off afterward.
Families for Fragile X held their first “Fragile X Walk” event on July 20 in Warwick, Rhode Island. More than 50 family members, caregivers, and the general public participated their first X Strides event.
We are excited to share we have three fantastic new Board Members joining the National Fragile X Foundation this year. Join us in welcoming Jill Dolan, Michele Kaplan, and Kerry Stedke to the NFXF Board of Directors.
Learn how we are equipping families with resources needed to plan for the future with confidence, while we continue to work towards treatments for Fragile X.
Learn how we are expanding our network of Fragile X clinics to better support individuals living with the Fragile X premutation.
One of our newest initiatives aims to intentionally extend our reach to underserved communities across the United States. In partnership with four Fragile X clinics, we’ve begun work to understand the challenges to diagnosis and treatment faced by Black, Hispanic and Native American communities and the providers who serve them.
Many in the community already know or know of our founder, Dr. Randi Hagerman. Dr. Hagerman told a short story about how the National Fragile X Foundation came to be at this year’s NFXF International Fragile X Conference, and we want to share her story with you.
Executive Director Hilary Rosselot shares with us some of what we’ve been able to accomplish so far this year with the support of our donors. Thank you to each and every one of you. You are making an incredible difference for families living with Fragile X!
This report, from Summer Scholar Marwa Zafarullah, is based on a study to help us better understand the impact of the CGG repeats on the different clinical premutation phenotypes and the molecular mechanisms behind the development of Fragile X-associated disorders.
To help spread awareness of Fragile X syndrome and life as a sibling of someone living with Fragile X, Sophia James, a top-10 finalist in the 2020 season of American Idol, delivered the keynote address on the opening day of the 17th NFXF International Fragile X Conference Virtual Series.
The Belonging Project aims to intentionally extend our reach to underserved and underrepresented communities across the United States. We have updates from three Fragile X clinics and our belongingness survey, and we will keep you updated as we continue to move forward.
Make a difference and take the Belonging in FX Survey today! Belonging is when each member of a community is treated and feels like a full member of that community. Sharing your experiences will help us close the gap in diversity, promoting inclusion and belonging within the Fragile X community.
More than 50 friends and supporters gathered on September 29 to eat great food, taste various wines, bid for prizes, and raise awareness and funds to support the Fragile X community.
NFXF Executive Director Hilary Rosselot and Advocacy Ambassador to the NFXF Board of Directors Dillon Kelley attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community with you.
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their ninth annual Bike To X Out Fragile X on Saturday, June 1, 2024, in Des Moines, Iowa.
In 2006, there were 11 medical institutions in the country with doctors and other specialists focusing on Fragile X syndrome. Today, there are more than 30 Fragile X clinics.
The Cincinnati Fragile X Research and Treatment Center provides clinical care for individuals with Fragile X syndrome and related conditions and disorders.
In the early years, attendance was considered great if a few hundred showed up. Nowadays, three to four times that number is the norm!
Organized by the Western Massachusetts Fragile X chapter this event brought together 26 competitive teams and 150 attendees and raised $4,000.
The NFXF launched a website in the mid-90s. Since many people had little to no online access, we would send them the entire website, which had been downloaded to a CD!
The 1990s and the increased scientific study of Fragile X and how the growing body of knowledge impacted the work of the NFXF.
The Fragile X Program provides services and referrals for children and young adults with FXS and FXD, including FXTAS and FXPOI.
In the early years, the inherited nature of Fragile X was not fully understood. However, early pioneers were making progress sorting out the genetics.
As a tribute to the organization’s rich history, we have cataloged our journey in monthly blog posts starting here, the year of our founding, 1984.
Nearly 60 doctors, clinic coordinators, and others from 20 of the 32 FXCRC clinics met at the Children’s Hospital outside Denver.
NFXF Greater Chicago Chapter hosted and organized two local events to bring together families living with Fragile X syndrome.
See 2023’s three NFXF Summer Scholars, Aditi Mahajan, Alexandra Singleton, and Maureen Butler,! summarize their summer project in a video presentation.
We met with the 2023 Summer Scholars Aditi Mahajan, Alexandra Singleton, and Maureen Butler, and mentors Drs. Randi Hagerman, Emily Allen, and Molly Losh.
NFXF board member Jed Seifert represented the NFXF at the CEO Commission’s Hill Day and shared his reflections on this powerful experience.
More research is needed to better understand the progression of FMRP expression across the lifespan and how FMRP is related to all aspects of functioning.
Congratulations to 2022’s five NFXF Summer Scholars — Andy King, Natalia Rivera Alfaro, Dominic DeBiasi, Jordan Norris, and Jessica Tang!
The American Academy of Pediatrics (AAP), with support from the CDC, hosted “Identification, Management, Caring for Children with Fragile X Syndrome Virtual Course” on June 22, 2022. The course will be available as a free AAP course through August 1, 2025.
Organized and hosted by Andrea and Kevin Marner, the 3rd Annual Quad Cities Fragile X Golf Outing on June 25, 2022, at the Byron Hills Golf Course in Byron Hills, Illinois, was a huge success
If you’re looking for fundraising ideas, consider these suggestions from Joey Christoff, who recently hosted his fourth “Fishing for a Cure” fundraiser.
The Western Massachusetts chapter hosted an evening of wine tasting, appetizers, a silent auction, and hand-roasted coffees for non-wine drinkers.
