Fragile X Advocacy Newsletter – April 2025
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
New Resources– Genetics of Fragile X
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Genetics of Fragile X — Webinar
Susan Howell, Rena Pressman, Marisa Vomvos, and Kate Shelly joined us for a one-hour Q & A discussing the Genetics of Fragile X.
ACTION ALERT:
Protect the Department of Education
Action Alert- Protect the Department of Education to ensure continued protections for all students, especially members of the Fragile X community.
Advocate for Fragile X From Home
Advocating from home is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!
Potential Impact of the Continuing Resolution on CDMRP/PRMRP Funding Opportunties
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
ACTION ALERT:
Advocate for Medicaid and the Fragile X Community
Action Alert- Advocate for Medicaid protection and the Fragile X community.
Preparing for the Return to Routine After a Long Break: Tips for Educators, Employers, and Caregivers
The return after a long break can be a difficult transition for anyone, especially an individual living with FXS. With thoughtful planning and a compassionate approach, the entire support team can help ease the process.
Enjoying Your Winter Holiday Season
Each person with Fragile X syndrome is different, so what works for one may not work for the other. We want you to enjoy the season, so we’ve gathered a list of activities, tips, and advice to set you up for success.
Navigating Challenging Behaviors — Webinar
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
Females with Fragile X Syndrome — Webinar
Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.
Fragile X Advocacy Newsletter – October 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
“X Strides With Greater Chicago” 2024 a Huge Success!
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.
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.