COVID-19 Check-In: Month 5
What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.
Getting Comfortable Wearing a Mask
Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.
Study: Cognition, Balance, and Walking Patterns in Males With a Premutation
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
COVID-19: My child is home from school or work or a day program! What do I do?
Timely advice from Jayne Dixon Weber for parents and families asking: What am I going to do with the children all day? How do I get supplies in the house? What if someone gets sick? What if I get sick? What about my work? What if things fall apart at home?
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).
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."
Enjoying Halloween with Sensory Challenges
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Tips for Flying on an Airplane
Traveling with your child living with Fragile X syndrome on an airplane can be very stressful for the both of you. These tips are provided by parents based on their experiences with their own children. »
Where is the Hope?
A grandmother of a newly diagnosed grandson once called me to talk about the diagnosis. “Where is the hope?” she asked. I did not say anything to see if she would go on. “I mean, »
Please Don’t Poo Poo This Article
This is one more story about children who do not want to go poo…in the toilet. (Sorry, I debated about which term to use): No. 2, BM, etc., but decided this one was the most »
