The National Fragile X Foundation in partnership with the Rush University Medical Center Fragile X and FXTAS clinic is hosting an education workshop. This workshop presents a unique opportunity where parents and professionals from around [...]
Premutation Carriers: FXAND, FXPOI, FXTAS and Everything In Between! The National Fragile X Foundation Kansas Chapter is hosting its 7th New Directions in Fragile X Conference that is going to be all about FX carriers! [...]
Educational Conference Featuring: Tracy Murnan Stackhouse, MA, OTR/L, Developmental FX Ruth Meissner, MA, CCC-SLP, Developmental FX Sharyn Lincoln, MS, CGC, Boston Children’s Hospital Jonathan Picker, MBChB, PhD, Boston Children’s Hospital What will be presented? Fragile [...]
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
We are now accepting submissions for presentations at the 16th International Fragile X Conference to be held July 11-15, 2018 in Cincinnati, Ohio. Please be sure to submit by Tuesday, February 20, 2018 at Midnight [...]
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 [...]
Whether you have decided to home school your child for a year or for an extended period, developing a curriculum can be a challenge. Start by setting goals for your child, research and experiment with [...]
The Early Intervention Process The Early Intervention Program for Infants and Toddlers with Disabilities is the program known as Part C of the Individuals with Disabilities Education Act (IDEA). It is also known as Child [...]
A Practical Approach for the Classroom This guide is intended for classroom teachers who may have little or no exposure to Fragile X syndrome (FXS). Our goal is to help make [...]
Have you ever been in a situation where you needed a quick way to explain Fragile X to a stranger or acquaintance? Maybe there is an incident at the grocery store and some people begin [...]
Several strategies can help in guiding a successful transition. If the student is going back to the same school with the same teaching staff, the transition process is easier and requires less support. When the student changes schools, neighborhoods, or programs, additional support is required.
With the anxiety and hyperarousal seen in children with Fragile X syndrome, it is important to plan for emergency events at your child’s school – a fire in the building and severe weather events, such as a tornado, a hurricane, a local fire, a chemical spill, etc. Lockdowns are discussed separately. If at all possible, develop a plan ahead of time, ideally at your child's IEP. If that is not possible, ask for a meeting to discuss this first thing of the school year.
Creating an IEP – or Individualized Educational Program – can be an incredibly confusing and daunting experience. The “alphabet soup” of acronyms and legalese often increases the anxiety and uneasiness for families. There are often [...]
One of the best programs that I have ever seen was the Adaptive Physical Education (PE) Class that was in place when my son, Ian, was in high school. It was a wonderful program [...]
“Siri, what is Fragile X syndrome?” She answers with: “I’m checking….here’s what I found.” She then provides links to the Wikipedia site definition of Fragile X, the NIH genetics home reference page on Fragile X and medicinenet page on Fragile X syndrome (FXS).