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Faces of Fragile X

Fragile X and Related Conditions occurs across generations of families and all walks of life.  Here we share with you some of the personal stories from within the FX community to not only inspire, but to inform and educate about all facets of FXS. 

Hope and Inspiration - Personal Stories from the FX Community

Coordinated by the National Fragile X Foundation, this site shares stories from some of the strong and distinctive voices within the Fragile X community. Read some of the unique perspectives that serve to inspire and foster awareness in this dedicated community.

Fragile X Portraits

Ever wonder what it is like to have Fragile X? What it could be like to be a parent, caregiver or family member to a person with FXS?  Coordinated by the FRAXA Research Foundation, this site shares family stories that help to answer some of those questions while serving to create awareness about the unique and self-determining individuals within the FX community.

Shared Stories with Multiple Perspectives

Living with Fragile X is a family affair.  Coordinated by the Fragile X Association of Australia, this site shares the unique, interlocking perspectives of a multigenerational family living with Fragile X, FXTAS and FXPOI.

Life with FXTAS: Supporting a Spouse with Fragile X-Associated Tremor Ataxia Syndrome

Coordinated by the the Glogal Genes Project, this site follows the story of Terri and Vince Corcoran as Terri shares her reality of caring for a partner with progressive FXTAS.   

Me and the X Man (pdf)

Written by Paul Solotaroff and published in Mens Health, this article follows the story of Paul and his son as they cope with the realities of Fragile X on a daily basis.  Written in strong, thought provoking language, Paul uses his story to raise awareness of Fragile X and the need for further research.
 
 
Disclaimer: Please note that the opinions expressed here are those of writers from the FX community who have chosen to share their stories with you. They do not imply any endorsement or opinions of Island Health and its employees.