Antisense Oligonucleotide (ASO) therapy being explored in Fragile X syndrome!
A publication was released this week summarizing one lab’s discovery that could lead to a future treatment for Fragile X- ASO therapy.
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.
Allos Pharma Inc. Receives FDA Guidance and Support for their Phase 3 Trial of Arbaclofen in Fragile X Syndrome
Allos Pharma Inc. received invaluable FDA feedback on the design of their Phase 3 trial for arbaclofen for the treatment of Fragile X syndrome.
The effect of college degree attainment on neurodegenerative symptoms in genetically at-risk women
Researchers at the University of Wisconsin explored the relationship between obtaining a college degree and the manifestation of the neurodegenerative symptoms of FXTAS among women at elevated genetic risk.
Fragile X-associated tremor/ataxia syndrome rating scale: Revision and content validity using a mixed method approach
Researchers across several institutions set out to develop a revised version of the FXTAS-RS designed to specifically assess FXTAS motor signs.
The Fragile X Clinic and Research Program at Rush University Medical Center
Highlighting the Fragile X Clinic at Rush University Medical Center, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
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!
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!
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)
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.
Why is the RECONNECT trial with ZYN002 Being Conducted in Fragile X Syndrome?
Zynerba Pharmaceuticals shares why the RECONNECT trial with ZYN002 is being conducted in Fragile X syndrome
Congratulations to the 2022 NFXF Summer Scholar Recipients
We asked our 2022 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!