The NFXF Blog
Research Funding Opportunity: RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions
In June 2024, NIH published RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions. If you or someone you know are researching FXS and/or FMR1-associated conditions, this could be a great funding opportunity for you!
Fragile X Advocacy Newsletter – June 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
The NFXF Heartland Chapter Hosts 9th Annual “Bike To X Out Fragile X”
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their 9th Annual Bike To X Out Fragile X on Saturday, June 1, 2024, in Des Moines, Iowa.
2024 Advocacy Day Experience – Dillon Kelley
Dillon Kelley, Advocacy Ambassador to the NFXF Board of Directors shares his experience at the 2024 NFXF Advocacy Day.
Addressing Aggressive Behavior in Adolescents and Adults with Fragile X Syndrome
New family-friendly content is available that will provide families and other caregivers with a better understanding of the possible causes of aggressive behavior along with recommendations for how to respond during and following an aggressive incident.
Improving Treatment Through Leadership of the FXCRC
Established in 2006, the NFXF Fragile X Clinical and Research Consortium is a network of over 30 clinics that specialize in Fragile X care.
Financially Empowering the Fragile X Community Through ABLE Accounts — Webinar
Join us for the Financially Empowering the Fragile X Community Through ABLE Accounts webinar with Mark Raymond Jr. & John Finch.
Your participation in FORWARD is meaningful and increases awareness about Fragile X Syndrome!
Two FORWARD papers published in American Journal of Medical Genetics Part A , were the top 10 most-cited papers published during the 2022-2023 period!
10 Basic Financial Steps for Special Needs Caregivers — Webinar
Kelly Piacenti joined us for the next topic of the NFXF Webinar Series -10 Basic Financial Steps for Special Needs Caregivers. She shared information to help caregivers get started in preparing for the financial future of their loved one with Fragile X.
Harmony Biosciences & RECONNECT Team Join FXS Community in Advocacy
Over the past six months, the Harmony team has worked alongside their colleagues at Zynerba and the RECONNECT trial to create and deepen existing ties with members of the Fragile X syndrome (FXS) community.
NFXF Gene Therapy Community Survey
Help the NFXF - share your thoughts on gene therapy.
NFXF International Fragile X Conferences
The NFXF International Fragile X Conference has grown significantly over the past 40 years, and remains profoundly impactful.