Advancing Our Understanding and Future Treatment of FXTAS — Webinar
Experts Deborah Hall, Maureen Leehey, Peter Todd, and Nancy Hertzig discuss the latest in FXTAS research and treatment.
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.
Premutation Carrier Concerns — Panel
Panelists Randi Hagerman, Heather Hipp, Emily Allen, and Marsha Mailick helps answer what it means for your health, your family, and your future at the 17th International Fragile X Conference.
Fragile X-Associated Tremor/Ataxia Syndrome 101 — Presentation
Neurologists Drs. Deborah Hall and Maureen Leehey provide an overview of FXTAS, a summary of the clinical features in the disease, and treatment options, including surgery, for FXTAS patients.
A COVID-19 Social Story from NFXF
The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
An Unregulated Life is No Laughing Matter — Webinar
Tracy Stackhouse teaches us the importance of self-regulation in individuals with Fragile X syndrome.
The How Toʼs of Sensory Diets in Fragile X Syndrome — Webinar
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
Mindfulness and Me — Webinar
From our good friends at Developmental FX, Tracy and Ruth on using movement and meditation to deal with the anxiety and challenges of daily life being turned upside down.
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?
Hyperarousal and Anxiety in Fragile X: A Mouse and Tracy 2-Day Workshop
The Fragile X Resource Center of Missouri hosted 100-plus attendees for a two-day Learning Series workshop November 2–3, 2018, led by fragile X experts Mouse and Tracy.