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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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, [...]
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 [...]
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 [...]
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 [...]
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. 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 [...]
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 [...]
Our latest podcast features Robert Miller of the National Fragile X Foundation and representatives of the the major pharmaceutical companies involved in ongoing Fragile X Clinical Trials. We have Dr. Paul Wang, Vice President, Clinical Development of [...]
We hope everyone has a wonderful Mother's Day today. We'd like thank everyone who participated in our calls for submissions. It is an honor to serve families with such dedicated mothers! [youtube]http://www.youtube.com/watch?v=3xYpcP86hNU[/youtube]
As of the first week of May, the NFXF room block at the InterContinental Miami has been SOLD OUT! For your convenience, we have contracted another block of rooms at the same great rate [...]
