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.
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.
Join the NFXF 2020 Virtual Graduation Celebration
Join the NFXF as we celebrate your graduation virtually, with special guest speaker Mr. Gregg Harper. Deadline: June 4, 2020.
How to Prepare for a Telehealth Visit
Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.
How Do We Cope with the Current Circumstances
In this new recording, Marcia Braden discusses strategies for daily living with COVID-19. She discusses how anxiety can fuel behavior, and she gives ideas on how to set up your day and accommodations you can make to help keep anxiety at a minimum.
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.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Get Moving with Special Olympics’ Fit 5
The Special Olympics is a valuable program for so many families, and the Fit 5 program can help with you and your child's daily living strategies and routines.
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?
Can I use CBD to treat Fragile X syndrome?
Craig Erickson, MD, the Director of the Cincinnati Fragile X Research and Treatment Center was asked by the National Fragile X Foundation (NFXF) to discuss the use of cannabidiol (CBD) for people with Fragile X syndrome (FXS) - to answer the questions around, Can I Use CBD to treat Fragile X syndrome.
What Advice Do You Have for SSI
we are developing materials for adults with Fragile X syndrome. One area we receive a lot of questions from parents on is advice for applying for Supplemental Security Income (SSI) for their 18-year-old son or daughter.
Postdoctoral Training Program in Intellectual and Developmental Disabilities Research Position Openings
The Waisman Center at the University of Wisconsin-Madison is recruiting postdoctoral trainees. The Waisman Center hosts a Fragile X clinic and conducts research on Fragile X-related disorders, such as this recently published research on other premutation carrier issues.
New Research Documents Other Premutation Carrier Issues
While two Fragile X-associated disorders affecting premutation carriers are well documented and accepted by the medical community, other effects of the premutation are a source of debate among the medical community because there has [...]
What is Early Check?
Early Check is a unique voluntary research study that screens newborns for Fragile X syndrome and the premutation and Spinal Muscular Atrophy free of charge. It gathers important information and hopes to show the benefits of early testing and treatment and improve newborn screening (NBS) across the United States.