The NFXF Blog
Top Financial Mistakes to Avoid for Special Needs Dependents— Webinar
Kelly Piacenti and Jerry Hulick joined us for the next topic of the NFXF Webinar Series - Top Financial Mistakes to Avoid for Special Needs Dependents. They shared common financial decisions that could impact your loved one's future benefits and supports.
Peer-Reviewed Medical Research Program’s FY25 Funding Opportunities for Researchers — Webinar
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 25
Announcing FY 2025 federal research funding opportunities across two award categories available for all Fragile X-associated conditions and disorders.
Little Rhody Warriors Host Successful X Strides Fragile X Awareness Walk
Little Rhody Warriors families held their second annual “Fragile X Awareness Walk” on May 18 in Warwick, Rhode Island. More than 50 family members, caregivers, and friends participated in this X Strides event.
Rhode Island Area Fragile X Family Night Out!
Rhode Island families gathered for a night out at a local restaurant on April 12th to share experiences and stories.
Harmony Biosciences RECONNECT Trial Reaches Enrollment Goal!
Harmony Biosciences shares that they have reached their enrollment goal for the Phase 3 RECONNECT trial and screening into the trial has officially closed.
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 2020. 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.