Fragile X News
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Let’s Talk! Medication for FXS with Dr. Craig Erickson
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Access to Conference Handouts
For those who were unable to attend our 2016 NFXF International Fragile X Conference, we are opening up the website which contains PDF files of handouts from the Conference. Read on for instructions. » FULL ARTICLE
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Principles of Human Genetics, Clinical & Ethical Correlation: Fragile X
On September 12, 2016, Western Massachusetts Fragile X hosted an educational event in collaboration with Dr. Joel Richter of Mass Medical School. Approximately 140 first-year medical students attended this event that highlighted Dr. Richter's research into fragile X syndrome. » FULL ARTICLE
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Feeding and Fragile X
Many children with fragile X syndrome struggle with feeding issues, ranging from over-stuffing to picky eating. Mealtime can become stressful for families if these feeding problems exist. This article highlights some common feeding difficulties that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family. » FULL ARTICLE
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Power Of Bravery
It was just an ordinary day with ordinary classes and ordinary people. I walked home from school that afternoon and sat in the same old squeaky, annoying living room chair I sit in every day. Little did I know that day, my life, as I knew it, would never be the same again. I can’t tell you the exact date or what else happened that day, but I do remember that was the day I found out I had something called Fragile X. What does that mean to an 11 year old girl? Nothing, I tell you. » FULL ARTICLE
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Parent Perspectives on Rapport in Speech-Language Treatment for Children
The purpose of this study is to explore parent perceptions of clinician-client relationships in speech-language treatment for children. We believe that the development of collaborative working relationships between speech-language pathologists, children receiving treatment, and their parents are important aspects of the treatment process. We are working to develop tools to accurately measure the strength of these relationships. » FULL ARTICLE
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Introducing the Vanderbilt Fragile X Clinic
The Center for Child Development at Vanderbilt University Medical Center and the Monroe Carell Jr. Children’s Hospital at Vanderbilt are proud to announce the opening of the Vanderbilt Fragile X Clinic. The goal of the clinic is to provide a comprehensive clinical services that are tailored to the needs of individuals with fragile X syndrome (FXS) and their families. The Vanderbilt Fragile X Clinic is a member of the Fragile X Clinical and Research Consortium (FXCRC), which is supported by the National Fragile X Foundation. » FULL ARTICLE
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Heartland Fragile X Hosts Bike Out Event
Heartland Fragile X hosted their first Bike Out Fragile X event, and it was tremendous success! » FULL ARTICLE
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Behavioral Treatment of Disruptive Behaviors in Boys with Fragile X Syndrome
Stanford School of Medicine is seeking boys, ages three and ten years, to participate in a study evaluating behavioral treatments for disruptive behaviors. » FULL ARTICLE
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Visual Wizardry: Using Visual Supports to Change your Child’s Life
Visual supports help translate the environment and expectations to an individual with FXS without requiring direct processing of language. This type of information can be processed quickly. Visual supports remain present, so they can be referred to more than one time, whereas verbal directions might be heard and then forgotten. Learning to use visual supports can help alleviate anxiety for the person with FXS and frustration for the person providing support. » FULL ARTICLE
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Fragile X of Minnesota’s Annual Family BBQ
Fragile X of Minnesota had a great family BBQ event on August 20, 2016. New faces, new friends and lots of fun. » FULL ARTICLE
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Toilet Training the Older Child
Toilet training continues to be an important issue for families who have children with fragile X syndrome. Several articles on the topic have appeared in previous publications. They mostly focused on introducing toilet training activities to younger children. It has been assumed that children of all ages would benefit from the same strategies, and if they were not initially successful with them, they may never make progress in toilet training. Experience has shown these assumptions to be inaccurate. There is hope for older children (from about age eight and up), but they require a different approach to toilet training. This » FULL ARTICLE
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2016 NFXF Conference Awards
The National Fragile X Foundation is very fortunate to have so many dedicated professionals and families who work to promote research and provide support for families and individuals living with Fragile X. At each conference, we take the opportunity to publicly acknowledge these tireless individuals who make our work possible. » FULL ARTICLE
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Nebraska Fragile X Let ‘Em Know 5K 2016
On July 23rd, the Nebraska Fragile X Families Resource and Support Group held a 5K at Ed Zorinsky Lake. Over 50 individuals participated! » FULL ARTICLE
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2015 Impact Report
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