The NFXF Blog
Fragile X Advocacy Newsletter – November 2023
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
The FMR1 and Related Conditions Clinic at Kennedy Krieger Institute
Highlighting the FMR1 and Related Conditions Clinic at the Kennedy Krieger Institute, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
A Message to the Fragile X Community from Harmony Biosciences
A Message to the Fragile X Community from, Jeffrey M. Dayno, MD, President and Chief Executive Officer of Harmony Biosciences
Employment Strategies and Successes — Webinar
In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!
Survey: What do you think about at-home research visits?
Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.
Fragile X Clinical & Research Consortium and Outcome Measures Meeting
The FXCRC met in Denver, CO to discuss the status of treatment in Fragile X syndrome. A half-day outcome measure meeting was held with representatives from the FDA, industry, the FXCRC and families living with FXS.
RECONNECT Trial Provides Flexibility for Families
Zynerba's RECONNECT trial provides flexibility for families with it's new virtual/at-home enrollment option
Meet The Schutz Family and #TeamWally
Meet #TeamWally, the force of family and friends behind Wally Schutz, who are helping to raise awareness of Fragile X syndrome and FMR1-associated conditions and disorders.
Community Event Highlights – Sibling & Self-Advocate Network (SSAN)
NFXF Sibling & Self-advocate Network hosted and organized virtual events to bring together the Fragile X community.
Community Event Highlights – NFXF Connecticut Chapter
NFXF Connecticut Chapter hosted and organized local events to bring together the Fragile X community.
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.