The NFXF Blog
Let's Talk Behavior and FXS
Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest "Let's Talk" Webinar on Behavior. She begins with a presentation on "How Neurobiology Affects FXS Behavior", followed by a Q&A session from members who were part of the webinar.
"Without question, it works." A message from the Chair of Public Policy
Some may call me a Washington Insider. I work inside the Beltway as a lobbyist who meets with Members of Congress every day trying to make a case for action. My office is right next to the Capitol. You could also call me a Fragile X Insider.
MIND Institute Study on Men with FX Premutation
We are searching for men who are carriers of the Fragile X premutation between the ages of 40 and 69 to participate in a longitudinal UC Davis research project, studying changes in brain and cognition associated with aging. For men who have not yet been tested, FMR1 DNA testing is completed to help determine eligibility for the study.
Brandeis University Looking for Girls with FXS Aged 13+
Lindsey Stobie, Masters candidate in the Genetic Counseling Program at Brandeis University Do you have a daughter with Fragile X syndrome? I am a graduate student in the Genetic Counseling Program at Brandeis University. [...]
Grateful Thoughts
As this year rushes to a close, I want to take a moment to tell you how grateful I am to be a part of the Fragile X community. I’ve learned so much from each of you – your determination, your commitment and your passion to make the lives of your families the best they can be is my daily inspiration....
Charity Navigator Awards NFXF With a 4-Star Rating
We are proud to announce that Charity Navigator has awarded us the prestigious rating of 4 Stars. That's the highest possible rating from America's Largest Charity Evaluator. The goal of the Charity Navigator is to [...]
Fragile X and the NFXF, Courtesy of the Giving Library
I'm very excited to share this short video I recorded recently thanks to the generosity of our friends at the Giving Library. In it, I talk about how Fragile X affects our lives and the ways the National Fragile X Foundation has helped make a world of difference to many families, including mine. I hope you'll take the time to watch it and share it with your family and friends.
NIH Funds Expansion of Research on iPad-Assisted Language Development
Photo courtesy of Autism Speaks The National Institutes of Health has awarded a major grant to conduct a clinical trial on iPad Assisted Language Development. An Autism Speaks funded study reported encouraging findings on [...]
When “Marriage” Is Spelled F-X-T-A-S
My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS.
Research: Roche is seeking participants for the Fragxis and FoXtail studies
Roche We are studying an experimental medication for Fragile X syndrome in children and adolescents. We hope to learn if this experimental medication is safe, how well your body manages the medication (tolerability), how [...]
Massachusetts Ends Sheltered Workshops, Sets Promising Model
Blueprint for Success sets the new mission statement for Massachusetts' Employment for Individuals with Disabilities As part of the Collaboration to Promote Self-Determination, one of the issues that we at the NFXF have [...]
UNC Child Neurologist Finds Potential Route to Better Treatments for Fragile X, Autism
Contact: Mark Derewicz mark.derewicz@unch.unc.edu (919) 923-0959 University of North Carolina Health Care CHAPEL HILL, N.C. – When you experience something, neurons in the brain send chemical signals called neurotransmitters across synapses to receptors on other [...]