The NFXF Blog
What are your plans for Awareness Day?
If you're not coming to Miami, the next best thing will be to check in regularly with us, starting with www.fragilex.org, where we'll have regular updates on National Fragile X Awareness Day and conference activities, [...]
Major Conference Agenda Updates
We pushed out a lot of changes to the last night. We have moved a few sessions around and restored the room information after significant changes to that. We have a few more [...]
Special Screening: "Mission to Lars" at the International Conference
http://vimeo.com/42276975 Because everyone deserves an adventure in their life. At the 13th International Fragile X Conference, the National Fragile X Foundation will be proud to present a very special screening of "Mission to Lars", a [...]
Breaking News – Seaside Therapeutics & Roche Announce Alliance to Advance Treatments
Roche and Seaside Therapeutics announced today that they have entered into a collaboration to develop disease modifying treatments for Fragile X syndrome (FXS) and autism spectrum disorders (ASD), both neurodevelopmental disorders
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 [...]