Identification, Management, Caring for Children with Fragile X Syndrome Virtual Course
By Hilary Rosselot
The American Academy of Pediatrics (AAP), with support from the CDC, hosted “Identification, Management, Caring for Children with Fragile X Syndrome Virtual Course” on June 22, 2022, which will be available as a free AAP course through August 1, 2025.
The CDC, who funds our long-time FORWARD Registry and Database, connected the National Fragile X Foundation with the AAP team working on this course. We were able to make recommendations to the course thanks to the CDC’s invitation.
Participants will learn skills to identify, manage, and care for children and adolescents with Fragile X syndrome, from leading experts on diagnosis, genetic testing, family support, and management strategies for patients with Fragile X syndrome. The course experts will be very familiar to the Fragile X community:
- Jayne Dixon Weber, community education director for NFXF.
- Dr. Reymundo Lozano from the Icahn School of Medicine at Mount Sinai.
- Dr. Nicole Tartaglia from the University of Colorado School of Medicine, Children’s Hospital Colorado. Dr. Tartaglia is also a member of the NFXF Scientific and Clinical Advisory Committee.
How to Take the Course
The event recording is available as a free online course through August 1, 2025. Anyone can participate in this course. Professionals may earn CME/MOC Part 2 credit upon completion. To register:
- Attendees need to have an AAP account, if you don’t already have one you can set up a free AAP account.
- Sign up for the course at shopAAP.
Thank you to the AAP and CDC for helping raise awareness for Fragile X!
about
Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!
Adults with Fragile X Syndrome:
Making a Better Tomorrow
We have built the ultimate guide on transitioning into and continuing to care for adults with Fragile X syndrome. Our ebook includes chapters on:
Transition to Adult Services ♦ Transportation ♦ Housing ♦ Employment, Volunteering & Day Programs ♦ College & Post-Secondary Education ♦ Daily Living
learn more
A Vision
When I was pregnant with my son I had many visions of our future. I envisioned watching him learn to walk and talk, hearing him say "I love you" for the first time, teaching him to read, and reading books from my childhood to him. I envisioned standing at a bus stop holding his hand on the first day of kindergarten. I envisioned sleepovers. I envisioned my husband teaching him to drive a car. I envisioned nagging him about his long hair or dirty room. I envisioned watching him graduate from high school and college. I envisioned him getting married. I envisioned him making me a grandmother.
A Journey to Hope
When our family began our journey in the Fragile X world in 1991, I could not say that I had a lot of hope for our two boys’ future. Everything was so full of uncertainty. Questions surrounded our family’s life and what the future would hold. If I had completely given into doubt, I would have lost momentum toward attaining any kind of hope.