Dr. Deby Barbouth explores evidence-based lifestyle choices, mind-body techniques, and more to enhance well-being for women with the Fragile X premutation.
Rebecca Shaffer leads two presentations about how to stay calm and manage intense emotions. The first is for self-advocates, and the second is for caregivers of individuals with Fragile X syndrome.
Hear about Denise’s hope for greater awareness and acceptance of Fragile X syndrome in our video series, created with Shionogi.
Hear about what Diane calls her “beautiful chaos” in our video series with the National Fragile X Foundation
Hear about Kara’s family’s experiences and how National Fragile X Foundation has helped them make their way.
Rene shares his story about his son’s diagnosis of Fragile X syndrome and about his hope for the future.
Jessie, mother of 5 with #FragileXSyndrome, shares her experience and what she hopes the future of care looks like.
Most people first hear about Fragile X when someone in their family is unexpectedly diagnosed. We have two letters from two moms to share with you.
A mother and wife shares the lessons she learned while navigating her son’s very scary Fragile X syndrome diagnosis and the ensuing pressure it put on her marriage.
Our panelists share strategies to help manage the risk of developing and treating Fragile X-associated conditions and recommendations for informing and advocating for your healthcare and mental health needs with your providers. This conversation focuses on the individual living with the Fragile X premutation while also recognizing that they may be a multi-generational caregiver within their family.
This presentation focuses on signs of emotion dysregulation in Fragile X syndrome and ways to respond including practical strategies and an Emotion Regulation Toolkit to download.
Anne Wheeler, PhD discusses how mothers of children with Fragile X syndrome may experience increased vulnerability to stress due to their premutation status.
Tracy Stackhouse and Ruth Meissner with Developmental FX share their mindfulness techniques for treating behaviors in Fragile X syndrome.
Behavioral outbursts and aggression are critical incidents in the home or the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns, which can amplify their response to these critical incidents.
Jayne Dixon Weber shares the many lessons her son with Fragile X syndrome has taught her family over the years, beginning with the day of his diagnosis