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Resources Available from The National Fragile X Foundation
The following is a list of resources available from the Foundation. Please see the order form for prices and ordering instructions.

 BOOKS

Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them (2007) 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."

Wrightslaw: 2004 (2006) Peter and Pamela Wright, founders of the Wrightslaw Web site have written this book that includes the full text of Parts A and B of IDEA 2004 with Commentary, Analysis, Interpretation, and Cross-References. This is an invaluable resource for every parent that has a child in special education.

Educating Children with Fragile X Syndrome (2004) Edited by Denise Dew-Hughes in Association with the Fragile X Society, UK. 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.

X Stories: The Personal Side of fragile X syndrome (2006) 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) 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

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. Our goal is to help make the teaching and learning environment from preschool though high school more effective, more efficient, and more rewarding for teachers and the student(s) with FXS who come under their care. We look to accomplish that goal by providing a wealth of practical information that includes background on FXS, descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for children with FXS at a variety of developmental levels. NOTE: This guide replaces and extensively incorporates Dr. Marcia Braden's "Curriculum Guide for Individuals With Fragile X Syndrome"

My eXtra Special Brother 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.
NOW AVAILABLE IN SPANISH!

The Oak Leaves NEW!
The Oak Leaves is a story of how two women linked by blood but living in different eras deal with 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.

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.

Educating Boys with Fragile X Syndrome: A Guide for Parents and Professionals (1994) by Gail Spiridigliozzi, et. al. This 20-page volume provides an excellent overview and introduction to those issues impacting the education of boys with fragile X. Sections include: Planning; Interventions; Social & Emotional Development; Behavior Management.

Fragile: Handle With Care - More About fragile X syndrome including Adolescents & Adults: (Revised Edition 2000) by Marcia L. Braden, PhD. 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.

Fragile X Syndrome - A Handbook for Families and Professionals (2002) by Brenda Finucane, et. al. 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 us via phone or email. You may also download it in Adobe Acrobat PDF format by clicking here

Fragile X Syndrome - Diagnosis, Treatment, and Research (2002) Edited by Randi Jenssen Hagerman, M.D., and Paul J. Hagerman, M .D., Ph.D.
Now substantially revised and updated, this acclaimed book discusses the clinical approach to diagnosing the disorder, supported by the latest research in epidemiology, molecular biology and genetics, and neuropsychology. It also presents information on treatment: genetic counseling, pharmacotherapy, intervention, and gene therapy.

Sindrome X Fragil (in Spanish) NEW!
"Síndrome X Frágil" es un libro de consulta para familias y professionales. Es un libro en cuya primera parte se tratan spectos medicos y genéticos del syndrome, incluyendo sus fenotipos físico y cognitivo. También se refiere a las manifestaciones en mujeres con premutación y fallo ovárico prematuro y al recientemente descubierto síndrome de tremblor-ataxia asociado al XF. Hay capítulos para el diagnóstico molecular y para el consejo genético de individuos afectados, familias o parejas de riesgo. La segunda parte incluye los aspectos educativos, laborales, sociales, así como los diferentes tipos de intervención y tratamiento farmacológico. Hay un apartado específico sobre los hermanos de los niños con síndrome X Frágil. El libro está escrito por miembros del Grupo de Investigación en Retraso Mental de Origen Genético (GIRMOGEN) y termina con un capítulo sobre las Asociaciones españolas de familias afectadas, escrito por el Presidente de la Federación Española del Síndrome X Frágil.

Medication Guide for Fragile X Syndrome (2004) by Michael Tranfaglia, MD. This book is provided by the FRAXA Research Foundation and is a supplemental guide for parents who want comprehensive information about medications in an accessible format. It is written to help parents make informed decisions with their physician about the care of children with fragile X syndrome.

My Brother has Fragile X Syndrome (1998) by Charles Steiger. Written by 8-year-old Charles, this book describes his life and experience with his older brother who has fragile X syndrome. A personal expression, this book makes a great addition to any family's reading list as they cope with a child with fragile X syndrome.

Transitioning "Special" Children Into Elementary School (1994) by Jayne Dixon Weber. Written by a parent of a child with fragile X syndrome, this is a warm yet practical guide for families and educators.

Boys with Fragile X Syndrome (1995) by Rebecca O'Connor, MA. This children's book is designed to enlighten and educate siblings, friends, classmates, and educators alike about the characteristics of fragile X. The author is a developmental specialist and has over 10 years experience in the development of treatment plans for children with fragile X syndrome.

The Source® for Fragile X Syndrome (2004) by Gail Harris-Schmidt, Ph.D. and Dale Fast, Ph.D. 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..

The Broken Toy (2005) by Marilyn Morgan, MS Ed. 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

Special Topics Pamphlet Series Request your free copy of one of the Special Topics pamphlets by contacting the National Fragile X Foundation at: 1-800-688-8765 Online: click here or by writing to: The National Fragile X Foundation PO Box 190488 San Francisco, CA 94119 Aggression and Fragile X Syndrome Behavior and Fragile X Syndrome Females and Fragile X Syndrome Sexuality and Fragile X Syndrome Three Generations FXTAS: An overview of Fragile X-associated Tremor/Ataxia Syndrome Speech & Language Therapy and Fragile X Syndrome Occupational Therapy and Fragile X Syndrome Sibling Issues: Living With a Brother or Sister Who Has Fragile X Syndrome Navigating SSI For Your Child Premature Ovarian Failure and its Relationship with Fragile X Toilet Training Individuals with Fragile X Syndrome

RESOURCE SETS Educational/Clinical    Faces of Fragile X -video    Fragile, Handle With Care -book    Lesson Planning Guide for Students with FXS -3-ring binder    The Source for FXS -book   Medical    FXS: Diagnosis, Treatment & Research -book    Medication Guide For FXS book     NOTE: Each Resource Set also includes: FXS Handbook, FXS Pamphlet (suitable for copying)  MULTIMEDIA My eXtra Special Brother - Audio CD 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. Educational Inclusion: A Mother's Perspective - DVD When UCLA's Neuropsychiatric Department found out how Dani Steiger was "Introducing" her Fragile X son by video before he joined his mainstream classes, they asked her to join an inclusion project. The resulting DVD & Video show Dani in a studio class setting, helping students understand Fragile X and teaching them tolerance for our differences as well. This 'Mother's Perspective' can be used to educate teachers, students and family or it can give you ideas to create your own program about your child. The DVD also includes two short news items: CBS Special Report: A Fragile Gift and  KEYT: Children First Females and Fragile X Syndrome (2002) - VHS or DVD-R: In this 20 minute video, 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. Faces of Fragile X (2000) - DVD-R: 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. From the Northern California Fragile X Association. The Adolescent and Adult Project (2006) - DVD: Smoothing the Transition to Successful Adulthood (2006) The National Fragile X Foundation receives phone calls on a daily basis asking for ideas on the issues affecting young adults with fragile X syndrome. Young adulthood can be a challenging time. There is so much going on. "Children" are leaving school, finding and working at jobs, and living away from their parents. These are big changes for both the parent and the young adult, and there is not much written information available, particularly for people with fragile X syndrome. These multimedia resources are a good starting place for parents and professionals to learn about the issues that children with FXS face as they move away from the school environment and become more independent in their lives. The DVD contains the following 1 1/2 to 3 minute vignettes on; Behavior Issues: • Mood Disorders • When Agitation Occurs: Remove, Relax, Refocus.  Social Skills: • Talking on the Telephone • Sensory Issues • Anxiety Issues.  Transportation: • Walking or Riding a Bike to Work • Riding a Public Bus Independently.  Employment: • Finding a Job: Building on Strengths & Interests • Developing Work Attributes.  Issues in Sexuality: • One Idea for Women • Private vs. Public (Masturbation). The included 3-ring binder contains sections on: Behavior, Mental Health, and Medications; Social Development; Living Settings; Transportation; Employment; Issues in Sexuality; Disability/Service Providers/ Organizations -- Miscellaneous. Fragile X Syndrome- Clinical and Molecular Aspects (2004) - CD: (for students or professionals) FRAGILE X SYNDROME is a stand-alone interactive CD-ROM integrating the genetics and clinical features of fragile X syndrome. The program covers clinical diagnosis, laboratory diagnostics, and personal perspectives. The program uses high quality media such as videos, animations and interactive images. 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. - Distributed in the US by the NFXF for the University of Melbourne and Fragile X Alliance, Inc. of Australia To view a special 5-minute version , please use the following link: http://www.ddhealthinfo.org/ggrc/doc2.asp?ParentID=3169 To view the current, or previous journals or newsletters, use the "Journals/Newsletters" menu on the left side of your screen. Please note that an issue may take a few moments to download. To subscribe, click here

 FRAGILE X CAR WINDOW DECALS and NECKLACES

(These stickers are being sold as a fundraiser for the NFXF and the Pennsylvania Fragile X Support Group Please click here for special ordering instructions.)
 

FRAGILE X STATIC WINDOW STICKER

NECKLACE at
The Fragile X Store

 AWARENESS ITEMS

White Polo Shirt with Green NFXF logo

FX Wristbands: "Fragile X…You Should Know" www.fragilex.org

 2006 ATLANTA CONFERENCE ITEMS

Conference Proceedings Binder or CD        

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