The NFXF Blog
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 [...]
Let Congress Know We Want Fragile X Research!
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 [...]
The Elusive X-Factor
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 [...]
Public Policy at Work: Abbeduto Given $3M NICHD Grant to Study Fragile X
The UC Davis MIND Institute reported on its website that a $3 million grant will allow their research team to investigate the effectiveness of testing procedures to examine the spoken language development of people with Fragile [...]
Research: Did You Grow Up in Iowa, or Know Someone Who Did?
the Neurodevelopmental Disabilities Laboratory and Northwestern University You can help us discover more about Fragile X syndrome and the FMR1 premutation! Our research team at Northwestern University is studying language and social characteristics related [...]