Premutation Concerns — Presentation
Dr. Randi Hagerman discusses all of the Fragile X-associated conditions and disorders and provides strategies for some of their characteristics.
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
“Wat Up?” and Other Steps to Socialization
“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.
Back to School Resources for Parents (and Teachers) of Fragile X Students
For the upcoming school year, we compiled our most popular school and education resources for parents and teachers.
2022 Medications Update — Webinar
Jayne Dixon Weber and Dr. Craig Erickson discuss new medications and review existing medications used for various issues related to Fragile X syndrome.
Let the Awareness Continue!
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.
Tips for Flying on an Airplane
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.
COVID-19 Check-In: Month 15 — Ready for Re-Entry?
Jayne offers advice to Fragile X families in transitioning back after post-COVID-lockdowns, from school, to housing, to work, and more.
Telehealth Visits: Suggestions for Parents on How to Prepare
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.
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.
Caring for Adults with Fragile X Syndrome — Panel
Our panel discussion from the 2020 conference on adult issues in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Marcia Braden, Jayne Dixon Weber, Craig Erickson, and Randi Hagerman.
Reproductive and Gynecologic Care for Women with the Fragile X Premutation — Presentation
Care for women with FXPOI who struggle with infertility and the health effects of early onset ovarian insufficiency, including hot flushes, night sweats, and risks of osteoporosis. With Heather Hipp, Jennifer Barber, and Keiko Mathewson.
Discussion on Medications — Panel
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
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?