Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in fragile X syndrome (FXS).
The International Fragile X Premutation Registry will help us learn about the Fragile X premutation and will build community and develop a group of individuals interested in participating in research. Learn more in this video from Dr. David Hessel of the University of California, Davis MIND Institute.
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.
Being the caretaker of someone with special needs, such as Fragile X syndrome, can be daunting. Isabel looks back at her journey, sharing advice and encouragement for new caregivers or those who have been doing it for years.
In 2019, Dr. Tabatadze and her colleagues ─ a small team of doctors ─ established the first local Fragile X laboratory in Georgia. They conducted a pilot study and tested 250 patients with autism spectrum disorder (ASD) and intellectual disabilities; the study yielded 11 positive results for Fragile X.
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 as we celebrate your graduation virtually, with special guest speaker Mr. Gregg Harper. Deadline: June 4, 2020.
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.
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.
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.
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.
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.
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.
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?
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.
