The NFXF Blog
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.
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.
Toilet Training the Older Child
Toilet training continues to be an important issue for families who have children with Fragile X syndrome. There is hope for older children, but they require a different approach to toilet training.
2015 Annual Impact Report
The 2015 Annual Impact Report highlights the past year show that Together, We're Stronger!
Oppositional or Merely Anxious?
Children with and without Fragile X syndrome learn to maneuver their environments in order to survive and thrive. In order to discern whether a behavior is oppositional, or merely a reaction to anxiety, pay attention to your reaction.
Research Study of Children with Fragile X Syndrome at Georgia State University
If your child is between six and 17 years of age, Georgia State University is interested in studying their walking pattern and bone mineral density.
Nebraska Launches the ENABLE National Program
The National Fragile X Foundation is pleased to announce that the state of Nebraska has now launched its version of an Achieving A Better Life Experience (ABLE) account. Known as the “ENABLE” national program, it offers enrollment to qualified individuals with disabilities both in Nebraska and throughout the country.