Community Event Highlights – NFXF Western Massachusetts Chapter
NFXF Western Massachusetts Chapter hosted and organized local events to bring together the Fragile X community.
Community Event Highlights – NFXF Greater Chicago Chapter
NFXF Greater Chicago chapter hosted and organized local events to bring together the Fragile X community.
Reproductive Health — Webinar
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
Education Strategies for Success — Webinar
Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!
Fragile X Advocacy Newsletter
Read and share the first edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences — Webinar
Adult housing options and support services may be limited and difficult to access. A group of parents shared their firsthand experiences supporting their loved one with Fragile X determine a suitable living situation.
The NFXF Heartland Chapter Hosts 8th Annual “Bike To X Out Fragile X”
The 8th Annual Bike to X Out Fragile X took place on a beautiful Saturday, June 3, 2023.
Rare Across America 2023
Register now to join other rare disease advocates for meetings between August 7th - 18th. Sign up today for Rare Across America!
NFXF Western MA and Connecticut Chapter Night Out
NFXF Western Massachusetts and Connecticut chapters host a night out
NFXF Western MA Chapter Host’s 7th Annual Hadley Cornhole Championship
NFXF Western Massachussets Chapter hosts their7th Annual Hadley Cornhole Championship fundraiser
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 23
Announcing FY 2023 federal research funding opportunities across six award categories available for all Fragile X- associated conditions and disorders.
Transitioning to Independence in Adulthood: What Helps? What Hurts? — Panel
A panel of experts present research-based information on the factors that promote or hinder the transition to independence of young adults with FXS after completion of high school and formal education. Panelists Leonard Abbeduto, Jessica Klusek, Angie Thurman, and Julie Lounds Taylor also take questions from the audience.
The NFXF Heartland Chapter Hosts Successful Summertime Fundraiser “Bike To X Out Fragile X”
The always popular Bike To X Out Fragile X fundraising event draws almost 70 riders for a unique bike ride through Des Moines and Waukee, Iowa. Learn more about their day.
NFXF Webinar Series: NIH Fragile X Centers of Excellence
Learn about the Centers for Collaborative Research in Fragile X and FMR1-Related Conditions Program, which supports research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
NFXF Webinar Series: How FORWARD is Advancing Our Understanding of Fragile X Syndrome
Representatives from the CDC join Dr. Elizabeth Berry Kravis discusses the advances made in understanding Fragile X Syndrome through FORWARD.