The NFXF Blog
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.
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.
Validation of the NIH Toolbox Cognitive Battery in Intellectual Disability
RESEARCH RESULTS ROUNDUP — Researchers have updated and validated a series of tests within the NIH Toolbox (NIHTB) to assess cognition in people with intellectual disability.
Controlled Trial of Lovastatin Combined With an Open-Label Treatment of a Parent-Implemented Language Intervention in Youth With Fragile X Syndrome
RESEARCH RESULTS ROUNDUP — Controlled trial explores whether the combined lovastatin/behavioral therapy approach would be more effective than just behavioral therapy alone.
PIXI Study: Parent-Infant Fragile X Intervention
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.
NFXF 2020 Virtual Graduation Ceremony
To honor all Fragile X self-advocates and siblings who are being promoted/graduating in 2020, we held a virtual graduation ceremony. Gregg Harper, former Member of Congress from Mississippi and a Fragile X dad, gave a commencement address.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
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.
Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel
Our expert panel, Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman, present research-based information on the factors that promote and hinder the transition to independence for adults with Fragile X syndrome.
Opinion Article: Autism Terminology and Clinical Practice
FORWARD // The simplified diagnosis of ASD, which merged previous diagnoses into a single disorder, has led to its use in plural (autism spectrum disorders) for different purposes.
American Idol’s Sophia James Introduces Her Brother James — Who Has FXS — to 8 Million Viewers
American Idol contestant Sophia James (formerly Wackerman) introduces her brother James, who has Fragile X syndrome, to more than 8 million viewers. Sophia took to social media to help spread awareness and advocate for Fragile X.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.