Research Summary // About nine out of 10 children and young adults with Fragile X syndrome received the immunizations recommended by CDC between birth and 18 years of age.
While two Fragile X-associated disorders affecting premutation carriers are well documented and accepted by the medical community, other effects of the premutation are a source of debate among the medical community because there has [...]
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.
I tell people Aaron is not just my son, he's my universe! He is 40 years old. He was one of the first to be diagnosed. He has had many therapies that have ultimately helped him. He is funny and bright in so many ways.
Early Check is a unique voluntary research study that screens newborns for Fragile X syndrome and the premutation and Spinal Muscular Atrophy free of charge. It gathers important information and hopes to show the benefits of early testing and treatment and improve newborn screening (NBS) across the United States.
Research Summary // A regularly cited group of behaviors in individuals with Fragile X syndrome, particularly males, is irritability, agitation, aggression and self-injurious behaviors.
We have preliminary evidence that metformin, a common type 2 diabetes medication, is beneficial for language, cognition, and behavior in both children and adults with Fragile X Syndrome.
Brian loves to be outside. He loves sports. He is on two baseball teams and a basketball team. He loves to bowl. He loves spending time with his friends. He is always helping and looking out for his friends and family. He struggles with managing his behaviors. Sometimes it is all people notice, which is sad because he is so much more.
Hilary Rosselot gives advice and guidance to participating in research studies and clinical trials. She is also joined by two Fragile X moms who have participated in several studies and trials and share their perspectives and advice.
Meet Avi. He has Fragile X syndrome, and his mom tells us what she loves about him, what she wants others to know, her advice for newly diagnosed families, and more. It is a peek into just one Fragile X family - but worth your time.