Fragile X Alliance Inc.

Resources Information

The Fragile X Alliance Inc is Australia's best source for educational aids for fragile X

The following is a list of educational aids produced by or available through Fragile X Alliance Inc. These resources are invaluable for parents, professionals, educational and medical institutions and organisations.

Books and Videos

1. Issues and Strategies for Educating Children with Fragile X Syndrome - A Monograph
Philip Wilson PhD, Tracy Stackhouse OTR, Rebecca O'Connor MS, Sara Scharfenaker MA, CCC-SLP and Randi Hagerman MD.
This 98 page educational monograph discusses specific medical issues, occupational therapy, speech and language therapy recommendations and strategies for meeting the needs of a child with fragile X syndrome in a regular classroom. A very detailed and excellent resource. Accompanying video available (see next).
Available from Fragile X Alliance for $44.00.

2. Educational Strategies and Issues for Children with Fragile X Syndrome
Video
In this accompanying 59 minute video to the above monograph, Dr Randi Hagerman,. Elizabeth Holder, Sara Scharfenaker, Tracy Stackhouse and numerous teachers present tactics for education children with fragile X syndrome. The video which includes molecular information and medication therapies, follows one child through a multidisciplinary evaluation. It then looks into the day of three children with fragile X who are respectively at kindergarten, fifth grade and secondary school.
Available from Fragile X Alliance for $44.00.

3. Fragile X Syndrome - A Handbook for Families and Professionals
Brenda Finucane, Allyn McConkie-Rosell and Amy Cronister.
This revised edition includes all of the newest molecular information including diagnostic DNA testing and is an ideal first guide for families, counsellors, educators, carers and all those wishing to learn about fragile X syndrome. This publication is in great demand by families and professionals.
Available from Fragile X Alliance for $5.50.

4. 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.
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 Fragile X Alliance for $16.50.

5. 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.
Available from Fragile X Alliance for $55.00

6. Fragile X Syndrome. Diagnosis, Treatment and Research
2nd edition 1996
Edited by Randi J Hagerman and Amy Cronister MS.
John Hopkins University Press.
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 second 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 Fragile X Alliance for $88.00.

7. Boys with Fragile X Syndrome
Rebecca O'Connor MA
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.
Available from Fragile X Alliance for $16.50.

8. The Fragile X Teachers' Education Kit
Includes:

1. Issues and Strategies for Educating Children with Fragile X Syndrome - A Monograph

2. Educational Strategies and Issues for Children with Fragile X Syndrome Video

3. Fragile X Syndrome - A Handbook for Families and Professionals

4. The educational multidisciplinary file set.

Available from Fragile X Alliance for $99.00

9. ***Educational membership file sets 1 & 2 ***
(PC floppy disc or booklet) - supplied with membership
These files are prepared by the National Fragile X Foundation through the collaborative efforts of numerous physicians, researchers, clinicians and parents, all with firsthand involvement in fragile X syndrome. They are suitable for parents and professionals and an index is enclosed. Highly recommended.
Available from Fragile X Alliance for $44.00

10. A Medication Guide for Fragile X Syndrome
Michael R Tranfaglia MD.
This wonderful guide by the founder of the FRAXA Research Foundation id 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 Fragile X Alliance for $33.00

11. Conference Video 1997
taped live November 1997.
Featuring leading experts from the USA Randi Hagerman, Louise Gane, Jennifer Hills and Bill Sobesky present and overview, treatment and management strategies, counselling and vocational issues.
Available from Fragile X Alliance for $38.50

12. Fragile X Alliance Clinic Handbook
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 from Fragile X Alliance for $27.50

13. Curriculum Guide for Individuals with Fragile X Syndrome
(Revised July 2000)
Marcia L Braden, PhD
This practical guide for use by teachers or parents covers all school ages and is written to assist those advocating for appropriate educational services whether in a self-contained setting or full included. The specific needs of those affected by FXS follow a step by step progression and is easy to follow.
Available from Fragile X Alliance for $44.00

To order, please contact Fragile X Alliance Inc on (03) 9528 1910 or print an order form below:

or

fill it out and either post it, fax it to (03) 9532 9555 or send as an attachment to an email to Fragile X Alliance Inc.

Please contact us for further information on the following:
Computer software recommendations and suggestions at Fragile X Alliance Inc.