Promoting Inclusive Early Childhood Environments for Young Children with Fragile X Syndrome — Presentation
This session explores ways to promote inclusivity at a young age for children with Fragile X syndrome. Presented by Jeanine Coleman, PhD.
Hands-on Sensory & Body-Based (Somatic) Self-Regulation for Hyperarousal & Anxiety in FXS — Presentation
Active sensory and body-based strategies are evidence-based to directly reduce hyperarousal, tame anxiety, and limit the impact of sensory reactivity. Presented by Tracy Murnan Stackhouse.
A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel
How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.
No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
This presentation explores health conditions for women who carry an FMR1 premutation for Fragile X syndrome. Presented by Emily Allen, PhD.
Dads Helping Dads With Will Bridges — Presentation
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome, followed by questions from the audience.
The Marner Family Hosts 3rd Annual Golf Outing in Support of NFXF
The 3rd Annual Quad Cities Fragile X Golf Outing on June 25, 2022, at the Byron Hills Golf Course in Byron Hills, Illinois, was a huge success — in spite of the threat of a downpour!
The Brothers Who Bake D&J Doggie Delights
Meet David and Jason who together bake and sell dog treats. But that's not their only job: David works as a stocker at a grocery store and paints and exhibits his work at a local gallery. Jason works as a dishwasher and cart attendant and loves to swim.
Growing Awareness of Fragile X-Associated Conditions
On May 5, 2022, The Wall Street Journal Weekend Edition showcased an article called “The Surprising Legacy of a Genetic Disorder” by Dr. Anne Skomorowsky. The essay summarizes the history of Fragile X and [...]
How to Create a Facebook Fundraiser
In this video, learn how to set up your fundraising page and link it to a parallel Facebook fundraising page. This connection has been a game-changer in helping to maximize fundraising efforts.
Using Mindfulness and Acceptance Techniques to Reduce Stress — Webinar
Dr. Anne Wheeler provides an overview of stress vulnerability in women with (and without) a premutation, and how mindfulness-based techniques can be helpful for increasing mindfulness, reducing stress, and improving overall well-being.
Back to School Resources for Parents (and Teachers) of Fragile X Students
For the 2019 school year, we compiled our most popular school and education resources for parents and teachers.