The NFXF Blog
‘Fishing for a Cure’ and Inspiration for Other Unique Fundraisers
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitch, is an example of inspiring and creative ways to raise money for Fragile X. Thank you Joey and Mitch!
Clinical Trial in Canada: Metformin
Researchers are testing the effectiveness of Metformin to help improve daily living for individuals with Fragile X syndrome. Individuals aged 6–25 who have been diagnosed with FXS may be eligible.
After the Autism Diagnosis: What You Need to Know About Genetic Testing
We found two issues potentially hindering the convergence of an autism diagnosis with a known genetic cause. One is lack solidarity on whether or not to recommend genetic testing, and the second is whether or not the test will include the FMR1 gene (or any specific gene for that matter).
Should I Use Cogmed Intervention for Memory and Attention in Fragile X Syndrome?
The NFXF's Clinical Trials Committee provides family-friendly recommendations on the use of Cogmed intervention for memory and attention in Fragile X syndrome.
A Computer-based Intervention for Memory and Attention in Fragile X Syndrome
A research team from the UC Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ - memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.
Sharing Your Special ‘Faces of Fragile X’
Your stories help educate the public about Fragile X and inspire more research toward new treatments and an eventual cure. Here’s why.
Fiscal Year 2020 NICHD Funding Letter
We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.
Two New Fragile X Research Papers Now Available
Two recently published, peer-reviewed Fragile X research papers are now available on our website: Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities, and Best Practices in Fragile X Syndrome Treatment Development.
Were New Fragile X Genes Discovered?
A conversation with David L. Nelson, Ph.D., a Professor at Baylor College of Medicine and a member of the NFXF Scientific Advisory Council. He is a co-discoverer of the FMR1 gene and the repeat expansion mutation that causes fragile X syndrome. He is answering questions about a recent study published in the journal Molecular Psychiatry and an accompanying press release about the paper from Northwestern University’s Feinberg School of Medicine. The headline of the press release claims, "New Fragile X Genes Discovered."
Our Top 5 Most Popular Posts … Ever
We took a peek behind our blog posts to see which were the most popular. These are the top 5 most popular posts as of April 2019.
The Friendship of Julian and Jonah
My son has Fragile X Syndrome and I often felt sad that friendship -- which I value enormously -- was something Julian didn’t even notice. He didn’t miss it; I missed it for him. After all, wishing for friends for your kid is pretty universal. Inclusive schools and communities are great on a societal level, but maybe not enough on a personal level.
Behavioral Issues in FXS+ASD
Thanks to FORWARD — the Fragile X Online Registry With Accessible Research Database — plus standardized clinician- and parent-reported data from 25 Fragile X clinics, we now have access to samples large enough to include a breakdown of findings by age groups.