On Saturday, October 15th the Fragile X Families of Phoenix CSN hosted its 3rd Annual Phoenix Fragile X Awareness Walk.
Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with Fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible.
Can you believe your child is starting high school? I know, they were just a toddler yesterday. As you begin this important part of your journey, remember the specifics of this information varies by state, school district and even by school. You know your child best so you want to set up services that work for your child. I tried to cover all aspects for all children with all their varying abilities so some of these items may not apply to you. This might look overwhelming, but if you take it one step at a time, you’ll do great!
Behavior management continues to be of tremendous importance to parents and professionals. Understanding the etiology of behavior in people with FXS is critical when creating proactive strategies to successfully manage that behavior. Knowing the triggers and manipulating ...
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.
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.
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.
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.
Stanford School of Medicine is seeking boys, ages three and ten years, to participate in a study evaluating behavioral treatments for disruptive behaviors.
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.