“Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling.
For the upcoming school year, we compiled our most popular school and education resources for parents and teachers.
Are you wondering when and how to talk to your daughter about her Fragile X syndrome diagnosis? If so, you are not alone. Here are some strategies to help in talking about your daughter’s FXS diagnosis with her.
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.
Traveling with your young or adult child with Fragile X syndrome 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.
