Traveling with your child with Fragile X syndrome (FXS) on an airplane can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. Find what works for you, your child, and your family.
Jayne offers advice to Fragile X families in transitioning back after post-COVID-lockdowns, from school, to housing, to work, and more.
As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult.
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.
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.
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
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?
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).
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."
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.
Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.
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 ...
Your son or daughter is moving out! Is it a parent’s dream? For many, yes, but… You have given your child your best of everything for his whole life. You have given your attention, ...
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. These are the lessons my family has learned since that time.
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.