The NFXF Blog
Spotlight on LINKS Groups: Fragile X Resource Group of Western New York
Janet Fisher and her husband started their LINKS group shortly after attending the International Fragile X Conference in Detroit. They truly enjoyed meeting so many people at the conference that had Fragile X children and [...]
Conference Reminders – Set Sail for Miami!
This year’s conference is ship-shape with some great keynote presenters lined up to start your full-sail days! Keynote Speakers Be buoyed up by on the latest research news presented by Elizabeth Berry-Kravis MD PhD, Kim [...]
The continued push for the ABLE Act and more
Jeffrey Cohen Director of Government Affairs & Advocacy To the casual observer it may look like absolutely nothing is going on in Washington, DC but if your observation stopped there you’d be missing a [...]
Reuters: "New Drugs, Fresh Hope for Autism Patients" and "Living with Fragile X"
An online Reuters article, published earlier today, and titled “New drugs, fresh hope for autism patients” along with the photographer’s blog entry, called “Living with Fragile X” and a Full Focus post, Reuters [...]
Supporting the Fragile X Community
Julie Stutzman Development Manager Chicago Mom has Bragging Rights! Back in February, LINKS Leader Melissa Zolecki’s younger children were collecting pennies for four different charities, one of which was Autism. Her daughter, Paige, asked [...]
Fragile X got Talent – Upload Your Photos & Videos!
Calling all performers with Fragile X: Let’s spice things up in Miami and have some fun with a homegrown Fragile X Talent Show! Do you (or your loved one) sing, play an instrument, dance, act, [...]
Researchers Need Your Help for New Targeted Treatment for Fragile X Syndrome
Seaside Therapeutics Seaside Therapeutics is working to deliver drug treatments that address the underlying causes of developmental disorders like Fragile X syndrome. Right now, Seaside is testing an investigational medicine for people [...]
Online Survey: Usage of Tablet App Technology by Individuals with Fragile X Syndrome
Laurie Yankowitz, EdD, and Vicki Sudhalter, PhD Has app technology made a qualitative difference for your affected family member? Please help us share valuable information about use of app technology by individuals with Fragile [...]
Pictures of Fragile X Fathers
Father's day is right around the corner and we're working on a tribute to some of the amazing Fragile X Dads out there. We would like you to share some pictures of your dad or [...]
Study Recruitment: When Do Seizures Occur in People with Epilepsy and Intellectual Disabilities?
University of Cambridge (UK) Researchers from the University of Cambridge (UK) are carrying out an online survey about situations that might increase or decrease the chances of children/adults with epilepsy and intellectual disability having [...]
Rep. Harper: Restraint Guidelines Endanger Children
Rep. Gregg Harper Special to Roll Call May 14, 2012, Midnight Every day in schools across the United States, students are being subjected to barbaric and potentially deadly treatment in the form of seclusion [...]
National Institutes of Health (NIH) Research Plan for FXS and Associated Disorders Meeting
NFXF Executive Director Robert Miller, parent and NFXF Director of Public Policy and Government Affairs Jeffrey Cohen and parent Tamaro Hudson just returned from a two-day meeting in Washington, DC where they helped update the [...]