NFXF Blog
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The initiative will build on our 40 years of work, promoting broader use of evidence-based information among individuals with FXS, caregivers, family members, community partners, and healthcare providers nationwide.
Enjoying Fall and Halloween with Sensory Challenges: A Guide for Fragile X Families
06 mins read
Why Fragile X Syndrome Treatment Information Feels So Confusing
08 mins read
Your Voice Matters: Prepare for Election Day and Beyond
05 mins read
Advocacy is Year-Round: What That Looks Like
05 mins read
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Learn about the BLOOM study for males ages 13–45 with Fragile X syndrome, including what is investigational medication, eligibility, what participation involves.
The study explores behavioral challenges in children living with FXS, including which behaviors commonly occur together and how they affect daily life. Learn what its findings mean for individuals and families living with Fragile X syndrome.
Anavex Life Sciences has announced that the U.S. Food and Drug Administration (FDA) has cleared its Investigational New Drug (IND) application for its product, blarcamesine (ANAVEX®2-73), allowing the company to move forward with plans to study the investigational medication in individuals living with Fragile X syndrome (FXS).
Explore resources to prepare to vote, learn about candidates, and discover how your voice can help keep Fragile X a priority beyond Election Day.
Practical strategies, sensory-friendly ideas, plus insights from NFXF community members to help keep fall enjoyable and low-stress.
How do researchers know whether a new treatment meaningfully improves life for people living with FXS? A recent study found that a commonly used behavioral measure in FXS clinical trials captures many of the challenges caregivers say matter most, including behaviors like social avoidance, irritability, and hyperactivity. These findings can help researchers choose meaningful ways to measure whether treatments are making a difference in everyday life.
We know many individuals living with Fragile X want to work, and though some do, not everyone who wants a job has found one that best fits their strengths and skill sets. We’re determined to help you educate yourself on the existing supports and how to best advocate in the workplace.
Shionogi provides updates on the EXPERIENCE adult and adolescent studies in Fragile X syndrome.
Advocacy for the NFXF means listening, learning, asking questions, and making sure the voice of the Fragile X community is part of the conversation.


