The NFXF Blog
11th Annual Mouse Races with Fragile X Resource Center of Missouri
Flags were flying and the crowds were jumping as (contained) mice ran their races at the 11th Annual Mouse Races to Support the Fragile X Resource Center of Missouri.
Language Challenges and Language Possibilities for Fragile X Syndrome
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.
Western Mass Fragile X Wine Tasting Fundraiser
On October 2nd, Western Massachusetts Fragile X partnered with Four Season's and Esselon Cafe to hose a wine tasting event, benefitting Fragile X.
Ten Things to Do When Your Child Starts High School
You know your child best so you want to set up services that work for your child. This might look overwhelming, but if you take it one step at a time, you’ll do great!
Proactive and Reactive Behavior Management for Your Child
Behavior management continues to be of tremendous importance to parents and professionals and understanding the etiology of behavior in people with Fragile X syndrome is critical when creating proactive strategies to successfully manage that behavior.
Cliniciansʼ Experiences with the Fragile X Clinical and Research Consortium
Research Summary // Suggestions for improvement included additional financial support and increased utilization of collected patient data for research purposes.
Importance of Fragile X Specialty Clinics
Research Summary // Appropriate clinical management of affected individuals and their family members have become critical in addressing medical needs to improve quality of life.
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.
Common Feeding Difficulties and How to Make Mealtime More Successful for Your Fragile X Family
Kristin Burgess Watson highlights some common feeding difficulties ranging from over-stuffing to picky eating that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family.
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.
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.
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.