The NFXF Blog
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.
Study: Examining Factors that Influence Expectations for Individuals with an Intellectual or Developmental Disability (IDD)
Dr. Grace Francis from George Mason University is conducting an online survey to explore factors that affect the expectations for individuals with intellectual or developmental disabilities (IDD), including Fragile X syndrome (FXS), after they finish school.
Help Us Reach the FORWARD-MARCH Enrollment Goal
We’re on a mission to enroll 600 participants with FXS born in 2003 through 2017. We’re halfway there and need your superhero help to hit our target!
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.
A Video Message From Shionogi
Following recent updates on Shionogi’s EXPERIENCE clinical trials, a video message from Juan Carlos Gomez of Shionogi & Co., Ltd.
What is Fragile X? A 90-Second Video
The NFXF has released a new 90-second video to help educate and spread awareness of Fragile X. Perfect for sharing!
Study: Identifying Translational Sleep Biomarkers in Autism
The Manoach Lab at Massachusetts General Hospital is conducting a research study to explore brain activity during sleep and sensory processing in individuals living with Fragile X syndrome (FXS).
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:
Contact Congress Securing NIH funding for Fragile X
We continue to see proposed changes this Congress that may have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — [...]