|A Medication Guide for Fragile X|
This is a detailed guide to medications commonly prescribed to help manage symptoms of Fragile X. This book will help parents understand the behavioral symptoms of fragile X and how medications act on these symptoms. Reference pages rate each drug's effectiveness, safety, convenience, and cost.
The guide is not a medical textbook and does not take the place of a physician. It is designed to serve as background and reference to help parents talk with their physicians.
Author: Michael Tranfaglia, MD, Psychiatrist, Parent, FRAXA Medical Director
Publisher: FraXa Research Foundation, Updated August 2004
Format: Book, paperback, 111 pages
|Children with Fragile X Syndrome|
A Parent`s Guide -- The First Book that Families should Read
Fragile X syndrome is believed to be the most common genetic cause of mental retardation, even more common than Down syndrome. It can result in a wide range of developmental delays, learning disabilities, and physical characteristics--which all tend to be more pronounced in boys than in girls.
At last, there is a comprehensive book on fragile X syndrome for parents. The first and only book of its kind, Children with Fragile X Syndrome provides a complete, sensitive introduction to fragile X syndrome, an inherited, genetic condition caused by a mutation on the X chromosome. This new guide is written by renowned professionals and experienced parents, who offer an in-depth look at the issues and concerns affecting children and their families. It covers: diagnosis; parental emotions; therapies and medications; development; early intervention; education; daily care; legal rights; and advocacy.
With recent breakthroughs in research and effective treatments, therapies, and educational strategies, the future of children with fragile X syndrome is more promising than ever. Now parents and families have this indispensable guide as a source of up-to-date information, answers to their questions, and support from people who know about the challenges of raising a child with fragile X syndrome.
Edited by: Jayne Dixon Weber
Publisher: Woodbine House, 2000
Format: Book, paperback, 369 pages
|Dillon is Different|
Fragile X Syndrome
To talk with 10-year-old Dillon Kelley, it is not readily apparent that he has a form of mental retardation. But that does not stop his 4th-grade classmates, who discern that he is unlike them without understanding why, from teasing and shunning him. In this program, ABC News anchor Ted Koppel compassionately presents Dillon’s story as an opportunity to better understand the genetic disorder called Fragile X syndrome. Through anecdotes, Dillon’s family members describe aspects of his behavior, the ostracism he faces, and the time when, in a bold and unusual step, they went to his school to explain to his peers why he is different.
Producer: ABC News -- originally broadcast 9/ 27/2002; Films for the Humanities Sciences, 2004
Format: DVD, 22 minutes running time
|Faces of Fragile X|
A 17 minute video showcasing nearly 20 children and teenagers, from 11 months to 20 years, affected by Fragile X. Filmed during clinical evaluations, at home and during therapy. Narration covers basic physical, developmental, cognitive and behavioral characteristics - no genetics. Helpful as an introduction for teachers, therapists, and others who work with children affected by Fragile X.
Producer: Northern California Fragile X Association, 2000
Format: VHS, 17 minutes running time
|Fragile X Syndrome Handbook|
A Handbook for Families and Professionals
The revised edition of this introduction to Fragile X includes overviews of all of the latest molecular, diagnostic and treatment information. Our Fragile X Syndrome, A Handbook for Families and Professionals is available to you at no cost, by contacting The National Fragile X Foundation via phone or email. You may also download it in Adobe Acrobat PDF format by clicking here.
Author: Brenda Finucane, et. al.
Publisher: The National Fragile X Foundation, 2002 1-800-688-8765
Format: Booklet, 21 pages
|Fragile X, Fragile Hope|
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.
"My son`s diagnosis with Fragile X syndrome and autism shattered my dreams for him and for my own life. Every day held a hundred losses to mourn. Before Zack came into my life, I heard a speaker on the radio say he wouldn`t trade the experience of having a child with special needs for anything. I thought, Liar! You`re just saying that to be positive. You don`t really mean it! After years of working through the grief, anger, and fear that Zack`s diagnosis brought, I have come to agree with the man on the radio."
Author: Elizabeth Griffin
Publisher: Emerald Books, 2005
Format: Book, paperback, 110 pages
|Fragile: Handle with Care|
More About Fragile X syndrome, including Adolescents and Adults
This book captures the essence and the characteristics of fragile X at all developmental stages. Good for parents and those who want a basic, thorough introduction to fragile X by a well-known expert.
Author: Marcia L. Braden, PhD.
Publisher: The National Fragile X Foundation, Revised Edition 2000
Format: Book, paperback, 201 pages
|The Broken Toy|
In The Broken Toy: A Story of a Fragile X Syndrome Child
, Marilyn Morgan delivers a powerful account of how dreams for her son took on a whole new meaning after a very special child entered her life. In this candid, engaging personal story, Morgan allows readers to enter a life filled with frustrations, tears and incomparable joys. From the first months of confusion to post diagnosis, readers discover how the family adapted its life to care for their son Danny. Patience and consistency were two keys to survival, and Morgan shares what she learned on this tough parenting adventure. She then traces Danny`s life into adulthood, as he continues to accept new challenges with a winning attitude and a survivor`s spirit.
Morgan writes, "We know each parent`s input molds the outcome of a child`s development. I am therefore hopeful that our life experiences will help each and every parent searching for assistance in raising their child with special needs." A native of Chicago, Morgan holds a master`s degree in education. The wisdom she gained from her years of experience infuse the book and provide inspirational answers to many parents who share the question, "What do I do now?" More information is available at www.brokentoybook.com
Author: Marilyn Morgan, MS Ed.
Publisher: AuthorHouse, 2005
Format: Book, paperback, 90 pages
|The National Fragile X Foundation Pamphlets|
The National Fragile X Foundation special topics pamphlets:
Syndrome Behavior and Fragile X Syndrome Females and Fragile X
Syndrome FXTAS: An overview of Fragile X-associated Tremor
Ataxia Syndrome Occupational Therapy and Fragile X Syndrome
Premature Ovarian Failure and its relationship with Fragile X
Sexuality and Fragile X Syndrome Sibling Issues: Living with a Brother or Sister who has Fragile X Syndrome
Speech and Language Therapy Understanding Fragile X
National Fragile X Foundation
2100 M St., NWSte.170 Box 302
Washington, DC 20037-1233
|The Source for Fragile X Syndrome|
An excellent book for explaining the nature of Fragile X, its effect on speech-language development and related issues. Chapters cover physical characteristics, cognitive development, sensory issues, speech language development, behavior and emotional issues, academic intervention, biological basis, future directions, education placements and programming.
Dr. Harris-Schmidt is an Associate Professor in the field of Communication Sciences and Disorders as well as the parent of a son with Fragile X. Dr. Fast is an Associate Professor of Biology.
Authors: Gail Harris-Schmidt, Ph.D. and Dale Fast, Ph.D.
Publisher: LinguiSystems, 2004
Format: Book, paperback, 142 pages