Books and Videos for Purchase
Educational Books
Many of these resources are available for purchase from Fragile X Alliance Inc based in Melbourne. (Order Form). These are marked with 
If you are not in Australia those marked with 
can be ordered directly from the National Fragile X Foundation.
Those marked with a * are also stocked by Amazon, where good quality second hand versions are sometimes available, but please ensure that you are buying the most up to date version and remember to take account of exchange rates.
Fragile X Alliance Clinic – Handbook
(Recommended as an initial overall guide for families and professionals)
This is the most up to date Australian guide for professionals and families. Prepared by the Fragile X Alliance Clinic staff, topics include medical and genetic issues, speech and language strategies, occupational therapy and sensory integration, vision and hearing issues, the use of medications and behaviour management strategies.
Available only from the Fragile X Alliance Inc for $27.50
Educating Boys with Fragile X Syndrome – A Guide for Parents and Professionals
Gail A Spiridigliozzi, Ave M Lachiewicz, Cynthia S MacMurdo, Andrea D Vizoso, Constance M O’Donnell, Allyn McConkie-Rosell and Debra J Burgess, Child Development Unit, Duke University Medical Centre.
(Recommended for primary teachers and families)
This excellent booklet provides information and ideas to parents, educators and therapists who work with boys with fragile X syndrome. It is of great value in the initial development of an appropriated education program for children with fragile X syndrome.
Available from the Fragile X Alliance Inc for $16.50
Fragile X Syndrome. Diagnosis, Treatment and Research *
Edited by Randi J Hagerman and Paul J Hagerman. John Hopkins University Press..(Recommended for professionals)
This superb 480 page book is a must for the professional with any interest in fragile x syndrome. Topics covered in part one include epidemiology and the associated cytogenetic and molecular findings, present research regarding protein studies and neuropsychology of the fragile X syndrome. The second part of the book covers treatment and management strategies including genetic counselling, medical follow up, psychopharmacology, psychotherapy, education, occupational therapy, speech and language therapy and protein and gene therapy. This new third edition is not only a very current review but in addition makes for fascinating reading. It is the one definitive text about fragile x syndrome. Available from the Fragile X Alliance Inc for $88.00.
A Medication Guide for Fragile X Syndrome
Michael R Tranfaglia MD.
(Recommended for professionals and carers)
This wonderful guide by the founder of the FRAXA Research Foundation is intended to serve as background to help parents, caretakers and others to communicate with their physicians regarding medications. The medications are only to be used under the supervision of a qualified physician and almost all are available only by prescription.
Available from the Fragile X Alliance Inc for $33.00 or by download from Dr Tranfaglia’s site, Dr Mike’s Psychiatry Blog, for US$14.95
Females and Fragile X Syndrome (2004) DVD
(Recommended for families and professionals)
In this 20 minute DVD, created by renowned fragile X psychologist, Dr. Marcia Braden, you will find scenes of females from preschool through adulthood. The genetic basis of fragile X females and inheritance is described along with interviews and scenes depicting girls and women in school, at play and at work. Throughout, a voice-over narration provides key points regarding the needs of females as well as the most appropriate interventions.
Available from the Fragile X Alliance Inc for $33.00
Fragile X Syndrome- Clinical and Molecular Aspects (2009) Version 2 CD
(Recommended for students or professionals)
FRAGILE X SYNDROME is a stand-alone interactive CD-ROM integrating the genetics and clinical features of fragile X syndrome. It is produced by Associate Professor Sylvia Metcalf from the University of Melbourne and Dr Jonathan Cohen from the Fragile X Alliance. The program covers clinical diagnosis, laboratory diagnostics, and personal perspectives and includes high quality media such as videos, animations and interactive images from Australian families. Multiple choice questions, glossary of terms and references are also included. This program will be useful for students studying human genetics, medical and biomedical courses, and for continuing professional education.
Available from the Fragile X Alliance Inc for $44.00
Lesson Planning Guide
Dr Marcia Braden
Available from the Fragile X Alliance for $33
Resources available to members of the Fragile X Alliance Inc
- An information brochure on Fragile X Syndrome,
- Copies of policy statements on diagnostic testing and health surveillance
- A set of multidisciplinary information files available as either printed materials or electronic file. These files, suitable
for parents and professionals, are prepared through the ollaborative efforts of numerous physicians, researchers, clinicians and parents, all with firsthand involvement in fragile X syndrome.
Fragile: Handle With Care. Understanding Fragile X Syndrome *
Marcia L Braden, PhD.
This is an exceptional book written by a master in the field of special education and behavioural psychology. Combining case studies and a handbook approach, the author gives us insight and understanding of the behavioural and cognitive profile that constitutes Fragile X Syndrome and which is unique among children with developmental disabilities. Specific behavioural management strategies are presented in a highly accessible manner for the management of patterns of learning and behaviour and thus allows us to both understand the child as well as implement effective intervention across a wide range of ages and situations. Issues generally not dealt with elsewhere are well developed here and include adolescent and sexuality issues, vocational training and adult living. Highly recommended for parents and professionals.
The Source for Fragile X Syndrome*
(2004) by Gail Harris-Schmidt, Ph.D. and Dale Fast, Ph.D.
Review by NFXF: 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..
Educating Children with Fragile X Syndrome *
(2004) Edited by Denise Dew-Hughes in Association with the Fragile X Society, UK.
Review by NFXF: This book benefits from the expertise of an international field of researchers, whose variety of perspectives contribute to their unique, multi-professional approach. Some chapters of the book are descriptive of the condition, while other chapters suggest practical intervention strategies, based on sound educational principles expressed in accessible non-specialist terms.
Educating Boys with Fragile X Syndrome
Rebecca O’Connor MA
Review by NFXF: From the Fragile X Awareness Series for Children, this book is intended to help children and families understand and explain the different features many boys with Fragile X Syndrome display. The author has worked with hundreds of children and affected families for many years. The books format as a colourful story book is an ideal way to help classmates and siblings discuss and understand the Fragile X Syndrome.
Lesson Planning Guide for Students with Fragile X Syndrome (2004)
by the Education Project Team of the National Fragile X Foundation. Whether your initial exposure comes through study, a friend, a relative, your own child, or a new and unique student who shows up at your classroom door the first day of school, you must begin somewhere in seeking to understand the challenges posed by children with FXS . This workbook is intended for classroom teachers who may have little or no exposure to FXS. This guide replaces and extensively incorporates Dr. Marcia Braden’s “Curriculum Guide for Individuals With Fragile X Syndrome”
Also available as a pdf download from the National Fragile X Foundation site.
Children With Fragile X Syndrome: A Parents Guide*
(2000) Edited by Jayne Dixon Weber
Written by leading professionals in the field and experienced parents. Up-to-date information helps families adjust, understand their child’s strengths and weaknesses and seek further help and expertise
Personal Stories/Novels
All of these are available from the National Fragile X Foundation.Those marked with a * are also stocked by Amazon, where good quality second hand versions are sometimes available.
Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them *
Clare Dunsford (2007)
Review by NFXF: Clare Dunsford draws on poetry and science to reflect on her life with J.P. and to illuminate his metaphoric way of communicating. Funny and touching stories show J.P.’s impressive verbal dexterity, not uncommon in those with fragile X, and his lovable cheeky streak. Eloquent and intimate, Spelling Love with an X reveals the disarming insights of a compassionate scholar on literature, genetic inheritance, and motherhood, and tells the story of a boy who is proud to be “just who I am.”
X Stories: The Personal Side of Fragile X Syndrome *
(2006) Charles W. Luckmann Paul S. Piper
Review by NFXF:Charles Luckmann and Paul Piper have added greatly to the growing body of literature about living with fragile X. Not only is this a terrific collection of observations and commentaries by parents, grandparents, siblings and caregivers, but Luckmann also shares eloquently about life with his own son Noah. Many of these entries will have a familiar ring to those caring for a person with fragile X. But any reader will find them worthwhile. – John Harrigan, parent and President of the NFXF’s Board of Trustees.
Fragile X, Fragile Hope*
(2005) Elizabeth Griffin
Review by NFXF: 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.”
My eXtra Special Brother*
Carly Heyman and Stephanie Conley
Review by NFXF:From the inspiration of a high school teacher, sixteen-year-old Carly Heyman writes about living with and loving her mentally impaired older brother who was born with Fragile X Syndrome. With complete candor, the young author entertains and teaches the reader about many of her experiences with her brother. She shares, in a most honest way, her struggles, frustrations, and finally her exhilarations as she learns the skills to cope with her brother’s limitations.
Since a very young age, Carly has been her brother’s greatest fan. She has loved him unconditionally and has accepted his uniqueness. However, her journey from accepting to rejoicing in his individuality has propelled her to write this book. She hopes that by sharing this journey with other siblings of children with special needs, she’ll be able to inspire a closer relationship between them.
The Oak Leaves Series 1*
A Novel by Maureen Lang
Talie Ingram learns through an old family journal that one of her ancestors was considered cursed because so many of the males in her family are “feebleminded.” She then sees signs of developmental delay in her own son and discovers this is due to Fragile X Syndrome.
Author Maureen Lang is a FX carrier and the mother of a child profoundly affected by FXS. Her novel delves into the denial, pain, guilt, anger, faith challenges, eventual acceptance, and unique joys often experienced by families living with Fragile X. Maureen Lang’s website:
The Oak Leaves Series 2 – On Sparrow Hill *
A Novel by Maureen Lang
Following on from series one another family member, Dana, also wants to learn more about her ancestors -especially one who opened a school for the “mentally challenged” in 1852. Dana finds out that, despite their precautions, she is expecting a baby, and their unborn child may be affected by Fragile X Syndrome.
The Broken Toy: A Story of a Fragile X Syndrome Child
(2005) by Marilyn Morgan, MS Ed.
Review www.brokentoybook.com “an inspirational account detailing the trials and triumphs of raising a special needs child. The goal is to help each and every parent with the courage, common sense, appropriate education, and love needed in raising their son or daughter …. details an engrossing and absorbing description of a special child’s development from infancy to adulthood”.
* Stocked by Amazon.
Available from the Fragile X Alliance Inc Australia
Available from the National Fragile X Foundation – USA
Note: For books that are not available from the Fragile X Alliance – it is cheaper to buy these from Amazon rather than Australian online bookshops.