The NFXF Blog
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!
Survey: Developing a Caregiver-Reported Survey in Neurodevelopmental Disorders: The Neurodevelopmental Disorder-Health Index (NDD-HI)
The Center of Health and Technology’s (CheT) Outcomes Division is conducting is conducting a survey to learn about [the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver.
FMR1 CGG Repeats and Stress Influence Self-Reported Cognitive Functioning in Mothers
Researchers at the University of Wisconsin looked at the relationship and influence of FMR1 CGG repeats and stress on self-reported cognitive functioning in mothers.
The diagnostic experience of women with fragile X–associated primary ovarian insufficiency (FXPOI)
Researchers at Emory University conducted qualitative interviews with 24 women with FXPOI exploring how FMR1 screening, physician education, and supportive care impacted their experience receiving a diagnosis. Their results are in!
Aging in Fragile X Syndrome — Webinar
Dr. Berry-Kravis presents a one hour Q&A about what we’ve learned from the FORWARD data on aging for individuals living with Fragile X syndrome.
The Behavioral Neurogenetics Clinic at Stanford Medicine Children’s Health
Highlighting the Fragile X Clinic at Stanford University School of Medicine in California, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Females with FXS: Strategies for Developing Executive Functioning and Social Skills — Webinar
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
7 Things You Didnʼt Learn About Fragile X in Biology Class
Fragile X is one of the more complicated conditions to explain, so we are sharing 7 basic facts about the biology and genetics of Fragile X
Now Enrolling! Tetra Therapeutics Shares Details of FXS Trials in a Short Video
Tetra Therapeutics Shares Details of the Now Enrolling FXS Trials in a Short Video.
NFXF Western MA and Connecticut Chapter Night Out
NFXF Western Massachusetts and Connecticut chapters host a night out
My Experience at Advocacy Day
Jaleesa Holden, NFXF Communications Manager, shares her experience as a first-time advocate at NFXF Advocacy Day 2023.
NFXF Western MA Chapter Host’s 7th Annual Hadley Cornhole Championship
NFXF Western Massachussets Chapter hosts their7th Annual Hadley Cornhole Championship fundraiser