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.
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.
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.
Fragile X of Minnesota had a great family BBQ event on August 20, 2016. New faces, new friends and lots of fun.
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.
The 2015 Annual Impact Report highlights the past year show that Together, We're Stronger!
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.
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.
Raising a child with special needs is challenging enough for an individual. When you factor in a relationship, the challenges increase, and the consequences for not caring for yourself and your relationship are more significant.
St. Louis siblings had a great May Day supporting each other and being crafty!
On June 22, 2016 the Western Massachusetts Fragile X group spoke at Kamp for Kids. Kamp for Kids is a camp specifically for kids with special needs. Pat, son of leader, Denise Devine, attended when he [...]
The National Fragile X Foundation is excited to announce the State of Tennessee’s launch of the country’s second Achieving a Better Life Experience (ABLE) program. ABLE TN is a national program, offering enrollment to qualified individuals with disabilities both in Tennessee and throughout the country.
The Translational Applied Behavior Analysis Laboratory at Stanford University is seeking boys with FXS to participate in an innovative new research study involving a brief social skills intervention and MRI brain imaging.
The focus of this research is on understanding how couples communicate about genetic testing in regards to their children and how they decide about future children knowing there is a potential or actual genetic risk.
