The NFXF Blog
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.
The Philippines Join the International Fragile X Movement
Robby Miller's story of his trip to the Philippines to establish a Fragile X clinic at the already existing MedMom Clinic in Manila.
Helping Fragile X Families in Colombia
With a number of colleagues from the UC Davis MIND Institute in California, including Dr. Randi Hagerman, and colleagues from the Asociación X Frágil Colombia, I just completed a 10-day trip throughout Colombia including Cali, Medellin, Bogota, Buqa and Ricaurte (the small, isolated rural town with ten times the typical prevalence of Fragile X). Our work involved numerous talks at medical centers and well-over 75 meetings with individual families.
Open Post-Doctoral Position in FMR1-related and ASD Research
The Waisman Center at the University of Wisconsin-Madison has an open position in the Post-Doctoral Training Program in Intellectual and Developmental Disabilities Research. This program has been supported continuously by NICHD since its inception in 1995, and over 95% of former trainees have obtained faculty and/or research positions relevant to IDD. The majority have successfully received extramural research funding.
NFXF Advocacy Day – Another Success
Advocacy Day 2019 is done, and by all measures, it was another success. Fragile X advocates visited 56 Senate offices and 61 House offices – all of their home districts. We had fun, connected with [...]
Boston Children’s Hospital Study: Neural Markers in Fragile X Syndrome
The purpose of this study is to improve our understanding of how differences in brain activity affect learning, language, and behavior in children with Fragile X Syndrome.