The NFXF Blog
A 10-Year Roaring Success for Central IL LINKS Group’s Annual Walk!
Ten years ago, Andrea (Schnarr) Wronkiewicz approached me about hosting a Walk for Fragile X in honor of my children—Parker and Allison—as her senior high school class project. That first walk brought together 150 people and raised $5,500. Our group—the Central IL Fragile X Group, with my co-leader Amy Zeleznik—partnered with Andrea again on Saturday, April 20, to host the 10th Annual Walk for Fragile X in Canton, IL.
Help shape federal agency strategies for youth and young adults with disabilities
Join the Conversation for Change: Help shape federal agency strategies for helping youth and young adults with disabilities successfully transition from school to work Overview To examine the impact of existing federal regulations and legislation [...]
Seaside Therapeutics Comments on News Report of “Failed” Autism Drug Trial
After the International Meeting for Autism Research in Spain, the news organization Reuters published an article titled “Key trial of Seaside autism drug fails to show benefit.” In order to provide context and help the [...]
Kennedy Krieger in MD Looking for Children 5-13 with Fragile X Syndrome
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 [...]
Sertraline Study for 24-60 Month Old Children 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 [...]
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.