The NFXF Blog
Proclaiming Fragile X Awareness Day At Home Plate in Fenway Park
Tuesday, April 23 was a proud day for Fragile X. That’s when Denise Devine of the Fragile X Resource Center of Western Massachusetts and my husband, Eric Welin, of the Fragile X LINKS Group of Eastern Massachusetts, stepped onto the field at Fenway Park in Boston, accompanied by our son, Caleb. They stood together behind home plate
How to Encourage Play — and Why Itʼs So Critical for Your Child
One of the common sites we encounter when visiting a child's home is a play area chock-full of every toy known to man, yet they won’t play with any of them. This exasperation is likely familiar to many of you.
The Fruits of Your Labor: Letter to the Appropriators signed by Senators
On Fragile X Advocacy Day, nearly 200 FX advocates braved the "Snowstorm That Wasn't" and asked their Members of Congress to sign letters to appropriators that were circulating from Senators Stabenow and Isakson and Representatives [...]
Major Capitol Hill Publication Runs Opinion Article on Fragile X Syndrome-Autism Links
Reps. Harper & Engel Cite New Research Breakthroughs; to Host Congressional Roundtable on May 17th The article which appears below ran in yesterday’s Roll Call newspaper, which is delivered to all congressional offices and widely available on [...]
A Roundtable on Special Needs featuring Robby Miller and Dr. Randi Hagerman
Tonight, on April 23, NFXF Executive Director Robert Miller and NFXF Founder Randi Hagerman will be headed to Palo Alto, CA to join a roundtable discussion with other experts on autism and special needs. The [...]
NFXF-funded Drug Research Shows Promise in Behavior Improvement
After three months of treatment with minocycline, children with Fragile X syndrome had greater improvements in general behavior, anxiety and mood-related behaviors, when compared with children with Fragile X syndrome who received placebo rather than the medication. The study was led by Mary Jacena Leigh, associate clinical professor of behavioral and developmental pediatrics with the Fragile X Treatment and Research Center at the MIND Institute.
New Research Leads to Better Understanding of FXTAS
The NFXF was excited to read this announcement from the University of Michigan Health System. There are a number of dedicated scientists and clinicians working on FXTAS, however new treatments have been slower in coming than for Fragile X syndrome.
Unifying the Chicago LINKS Groups
We’re excited to announce that the Fragile X Families of SW Chicago LINKS Group and Fragile X Resource Group of Greater Chicago are merging to form the Fragile X LINKS Group of Greater Chicago! Be sure to bookmark our site, chicago.fragilex.org.
Memories of Joan Canel
Linda Sorensen, MS Associate Director I received an interesting phone call back in the fall of 2008. It was from Joan Canel, and she wanted to know why there wasn’t more going on in [...]
Let the Senate Know We Need Fragile X Funding!
The "letter to appropriators" urging support for Fragile X funding has now been presented in the Senate by our FX champions, Senators Stabenow and Isakson. So far, none of their colleagues have signed on, but [...]
Is Fragile X the Key to Unlocking the Mystery of Autism?
Later this spring, Congressman Greg Harper (R-MS) and the National Fragile X Foundation will host a Congressional Roundtable to explore how best to realize the full potential of these research breakthroughs linking Fragile X and autism. The White House clearly sees this potential as well, as the proposed $100 million brain mapping project will only accelerate the pace at which Fragile X and autism will be conquered.
A New World of Fragile X Resources
The communications world is moving faster than ever now that you can access information right at your fingertips, whether by smartphone, tablet, or computer on your lap or your desk. That’s why the National Fragile [...]