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The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitch, is an example of inspiring and creative ways to raise money for Fragile X. Thank you Joey and Mitch!
We found two issues potentially hindering the convergence of an autism diagnosis with a known genetic cause. One is lack solidarity on whether or not to recommend genetic testing, and the second is whether or not the test will include the FMR1 gene (or any specific gene for that matter).
We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.
Best Practices in Fragile X Syndrome Treatment Development By Craig A. Erickson, Walter E. Kaufmann, Dejan B. Budimirovic, Ave Lachiewicz, Barbara Haas-Givler, Robert M. Miller, Jayne Dixon Weber, Leonard Abbeduto, David Hessl, Randi J. [...]
We took a peek behind our blog posts to see which were the most popular. These are the top 5 most popular posts as of April 2019.
Understanding Fragile X & Autism Individuals with Fragile X syndrome (FXS) are frequently co-diagnosed with autism spectrum disorder, and families and some professionals are often confused by the relationship between the two. Much of [...]
Consensus of the Fragile X Clinical & Research Consortium Behavioral Challenges in Fragile X Syndrome A Consensus of the Fragile X Clinical and Research Consortium Reading Time: 29 min.—|—Last Updated: Dec. 2018—|—First [...]
When people ask me, What do you do? I tell them I help people living with a rare genetic disorder live their best lives — every day. After a pause, their response is often something along the lines of, Wow… that sounds really meaningful! I nod my head [...]
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
Congressional Fragile X CaucusMission: The Congressional Fragile X Caucus will increase awareness of the public and private efforts underway to treat patients and develop therapies, and will identify ways Congress and federal agencies can better [...]
