Resources
Books
More Resources
Becoming Mrs. Rogers: Learning to Live the Fragile X Way
Cindi Rogers is the mother of two adult sons who are affected with Fragile X Syndrome and autism. Cindi has become a leader and symbol of hope within the Fragile X community speaking to families worldwide and providing her innovative strategies to help them not only live with fragile X, but thrive.
Understanding Fragile X Syndrome: A Guide for Families and Professionals
This book breaks down the complex science of this genetic disorder and provides the facts and advice that every bewildered parent or professional needs to support individuals with Fragile X syndrome.
Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs
Whether you are a parent of a child with special needs or you struggle with unresolved grief, chronic stress, or depression, “Fragile X, Fragile Hope” shows without a doubt that you can survive, and more than survive, you can find your way back to a joy-filled life.
Growing Up with Fragile X Syndrome: The Road to Marty Campbell – By: Robyn Iredale
This book, written by his mother, traces the story of Marty’s birth, his early childhood years, going to school and finding work and his gradual evolution into a semi-independent adult, as well as the joys and achievements.
Spelling Love with an X: A Mother, A Son, and the Gene that Binds Them
Clare Dunsford discovered that she and three of her four siblings carried the fragile X premutation and that her son was affected. Through vivid descriptions of her relationship her son with Fragile X Syndrome., readers can glimpse the parental highs and lows of life with a child who has developmental delays
X Stories: The Personal Side of Fragile X Syndrome
The Personal Side of Fragile X Syndrome, people who have been touched by fragile X tell in their own words how the experience has touched and transformed their lives.
Downloads
- FRAXA Brochures (FRAXA)
- Fragile X Syndrome Leaflets (Fragile X Society UK)
- Fragile X Myth Busters Download for Families (American Academy of Pediatrics)
- A guide for the newly-diagnosed and thosealready living with Fragile X. (NFXF)
Other Useful Resources
- Fragile X Awareness News on paper.li
- Fragile X syndrome: Video overview with transcripts in multiple languages
- Living With Fragile X Resources (NFXF)
- Living with Fragile X syndrome (Fragile X Research Foundation of Canada)
- USA Community Support Network (NFXF)
- Men’s Health and the Fragile X Premutation: A Guide for Carriers, Caregivers, and Health Professionals (Issuu)