Kennedy Krieger Institute Got Fragile X? Participate in a New Clinical Trial for Children with Fragile X Syndrome! Kennedy Krieger Institute is looking for children, ages 5 through 13 years, with Fragile X syndrome [...]
UC Davis MIND Institute Sertraline Study - Clinical Trials We are actively recruiting children diagnosed with FXS between 24-60 months old to participate in a groundbreaking study! We have preliminary evidence that sertraline, a [...]
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
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 [...]
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 [...]
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 [...]
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.
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.
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.
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 [...]
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 [...]
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.
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 [...]
It’s Advocacy Time Again—Fragile X Needs Your Help Today! As you all know, nearly 200 Fragile X advocates gathered in Washington, DC on March 6 to brave the snow storm that wasn’t and then hand-carry [...]
Patricia J. Heavren As long as I can remember, I’ve been on a journey to discover the extraordinary in the everyday world—especially extraordinary people, the home-grown “stars of life” with that elusive “X” factor. My [...]
