The NFXF Blog
Where is the Hope?
Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.
Enter the 2017 Rare Artist Contest by EveryLife Foundation
EveryLife Foundation is holding the Rare Artist Art Contest and we encourage you to enter! All members of the rare disease community throughout the world – including patients, caregivers, family, researchers and medical professionals – are [...]
Target and Tommy Hilfiger introduce adaptive clothing for people with special needs
Both Target and Tommy Hilfiger are announcing new adaptive clothing to accommodate the needs of people with disabilities. Target releases their adaptive clothing for children under their Cat & Jack brand. These clothes include removable [...]
Autism Spectrum Disorder in Fragile X Syndrome: Co-Occurring Conditions and Current Treatment — Webinar
Individuals with a dual diagnosis of Fragile X syndrome and autism have reported greater cognitive and behavioral impairment. With Dr. Walter E. Kaufmann.
Southeast Pennsylvania Brings Experts for a Great Conference!
It had been a while since Fragile X Southeast Pennsylvania held an educational conference and this one did not disappoint! Approximately fifty people gathered to hear Medical, Educational and Behavioral Interventions for Fragile X. We [...]
Honoring Margaret and Martin Israel with the NFXF Lifetime Achievement Award
The National Fragile X Foundation is pleased to announce that we will be honoring Margaret and Martin Israel as the recipients of the 2017 Lifetime Achievement Award. An award presentation and celebration will be held in [...]
St. Louis Celebrates Its 25th Anniversary at the Mouse Races
The Fragile X Resource Center of Missouri hosted its 12th Annual Fragile X Mouse Races on Saturday, September 23rd. Nearly 150 guests enjoyed a fast-paced evening of Mouse Races, Mouse Roulette, and bidding on raffle [...]
10 Rules of Time-Out
I have found these 10 time-out “rules” to be the keys to success. They are based on the fundamental principles and incorporate adaptations for children with Fragile X syndrome by accommodating repetition, consistency, and predictability.
Please Donʼt Poo Poo This Article
This is one more story about children who do not want to go poo … in the toilet. It is probably not for the faint of heart, though it does make you realize that you will do anything for your children.
Education and Fragile X Syndrome
Children whose development is affected by Fragile X syndrome are eligible for special education services. Part C of the Individuals with Disabilities Education Act (IDEA), a federal law, provides for services to children from birth [...]
Reasons to Visit a Clinic
While every Fragile X clinic is set up a little differently, they all offer similar services. They are staffed by people who understand Fragile X. Examples of evaluations offered at clinics through an initial intake include: medical, [...]
Planning Your Visit to a Fragile X Clinic
Why should you visit a Fragile X clinic? Because you won’t hear, “Fragile what?” You will have the opportunity to meet with a team of people who will be able to provide guidance in many [...]