Author: NFXF

Changes are Underway at the Foundation

The Board of the NFXF is very pleased to announce that it has named Linda Sorensen, our current Chief Operating Officer, as Acting Executive Director, effective immediately. Linda, who has been with the Foundation for almost 15 years, knows the community inside and out, and is perfectly positioned to lead the Foundation’s family-first mission of



Ten Rules of Time-Out

by NFXF

When consulting with parents regarding behavior issues, the topic of time-out comes up during the majority of my conversations. Parents and professionals alike have used time-out as an effective tool for many years—even before it was called time-out. Research has supported its usefulness with typically developing children as well as those with delays such as



Toilet Training Child With Fragile X Syndrome: An Overview and Guide

Toilet training the child with Fragile X syndrome (FXS) often, but not always, takes the same form as it does with other children. It starts with the basics: Parents may need to teach their child about “wet” and “dry” (applied to both urination and bowel movements). When checking your child’s diaper, let him know what

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 to 3 years of age. Part B of IDEA mandates a free public education for children who qualify from the

Study: Cognition, Balance, and Walking Patterns in Fragile X Premutation Carriers

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Rush University Medical Center. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as

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, speech, occupational, physical and behavioral therapy, and genetic counseling. Additional specialist services may include referrals to psychiatrists, psychologists, neurologists, cardiologists,

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 areas of raising your child or children. Just as importantly, once you establish a relationship with the Fragile X doctor,



Home Schooling and Fragile X

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 ways your child learns, review various curriculums, and put together a program for your child. Here are websites to get



Early Intervention for Infants and Toddlers with Fragile X Syndrome

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 Find. Part C is a federal grant program that encourages states to set up programs for young children with disabilities



Consensus of the Fragile X Clinical & Research Consortium on Clinical Practices

The Guidelines represent expert consensus and not evidence-based studies. The clinical committee of the Fragile X Clinical & Research Consortium (FXCRC) could be thought of as a “consensus panel” since virtually every clinician in the USA seeing and managing a large number of patients with Fragile X syndrome and other Fragile X-associated Disorders is represented.



Survey: Communication with Children Unaffected by Fragile X

by NFXF

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of University of Maryland. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to

Western Mass Speaks to Medical Students

Denise Devine of Western Massachusetts Fragile X spoke to first year medical students about iliving with a family member with Fragile X. She showed pictures of Patrick through the years and other families in the Western Mass group.Talked about school, developments, medications, therapies, what daily life is like, family dynamics. She filled them in on his