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Syndromes & Conditions - Rett Syndrome


Can do fun : adapted communication and motor activities for Rett Syndrome and other developmental disabilities / Murphy, Jane W.; Newby, Suellen. -- Solana Beach, Ca: Mayer-Johnson Inc. 2002. x, 160 p.

This book demonstrates to parents, carers and therapists that individuals with Rett Syndrome and other developmental disabilities can successfully communicate and participate in a variety of activities when given opportunities and tools to assist them. Activities have been grouped into the following categories: self care; home care; arts and crafts; stories; music; games; and cooking. Each activity includes: learning objectives; what you'll need; what to do; and communication symbols that represent the vocabulary individuals need to express in order to successfully participate.

SC/RET MUR [P12497]

Epilepsy and Rett syndrome : a practical guide for parents / Glaze, Daniel G.; Schultz, Rebecca; Hunter, Kathy. / INTERNATIONAL RETT SYNDROME ASSOCIATION. -- Fort Washington, Md: International Rett Syndrome Association, n.d. 15p.

Provides basic information about epilepsy for parents of children with Rett syndrome who may have a seizure disorder.

SC/RET GLA [P09573]

Grief dancers : a journey into the depths of the soul / Zimmermann, Susan. -- Golden, Colo.: Nemo Press, 1996. 245p

The moving story of a mother who struggles to come to terms with the fact that her child is severely disabled with Rett syndrome and all that that means for her as a parent. The underlying message is that the challenge of grief can be a starting point for the most valuable, powerful life journey we will ever undertake.

SC/RET ZIM [P06120]

The lost girls: living with Rett syndrome / Hunniford, Gloria. Yorkshire Television, 1998. 1 videocassette (39 min.)

Rett syndrome is a complex neurological disorder that occurs only in females and affects them throughout their lives. The video looks at several girls affected with the syndrome and has input from doctors, parents and teachers.

SC/V RET LOS [P09693]

Nutrition care guidelines for Rett syndrome / Rice, Marylynne A. -- Fort Washington, Md: International Rett Syndrome Association, 1989. 19p

Aimed at parents the booklet provides information on the factors affecting the nutritional health of a child with Rett syndrome and useful management strategies for daily home care.

SC/RET RIC [P09575]

Orthopaedic problems in Rett syndrome: an information manual for parents / Sponseller, Paul D. / INTERNATIONAL RETT SYNDROME ASSOCIATION. -- Fort Washington, Md: International Rett Syndrome Association, n.d. 11p

Discusses the common musculoskeletal disorders of Rett syndrome such as scoliosis, kyphosis, hip instability and foot problems and some corrective procedures which may be used.

SC/RET SPO [P09574]

The parent idea book : managing Rett syndrome / INTERNATIONAL RETT SYNDROME ASSOCIATION. -- Fort Washington, Md: International Rett Syndrome Association, 55 p.

"A collection of innovative thoughts and ideas gathered through practical experience, creativity and love".

SC / RET PAR [P11125]

Pathways to learning in Rett syndrome / Lewis, Jackie E; Wilson, C Debbie. -- London: David Fulton Publishers, 1998. 133 p.

Based on their research into the factors that affect learning and the specific barriers to learning in Rett syndome, the authors look at the implications of their findings for teachers. They provide advice on curriculum planning and suggest specific teaching strategies. For parents, this book provides a valuable insight into the educational implications of this syndrome for their child.

SC/RET LEW [P09297]

Rebecca's gift / Hulst, Jane. -- Auckland: 2002. 46 p. : col. ill.

This picture book is the story of Rebecca, a child with Rett syndrome. It shows how Rebecca lives each day and interacts with her family and friends, at home, at school and in the community.

SC/RET HUL [P09418]

Rett syndrome - a closer look / Osterman, Rosalind; Hunter, Kathy. / INTERNATIONAL RETT SYNDROME ASSOCIATION. International Rett Syndrome Association, 1992. 1 DVD (55 mins.)

An in depth look at Rett syndrome including diagnosis, the stages of development and pattern of progression. Doctors and parents discuss common concerns held by parents and ways of coping. For parents and staff. Quality of tape is at times poor.

SC/V RET RET [P08687;P08740]

The Rett syndrome handbook / Hunter, Kathy. -- Clinton, MD: International Rett Syndrome Association, 2007. xxv, 577 p. + CD ROM

The author of this extensively updated 2nd edition is both a parent of a child with Rett Syndrome and founder of the International Rett Syndrome Association. This comprehensive handbook has chapters covering general information including diagnosis, genetics and the nervous system; family issues; common problems; care and management; therapeutics; daily life; resources including equipment, websites, books and where to go for help; and future research.

SC/RET HUN [P12013 ]

The Rett Syndrome handbook: in words you can understand from those who understand / Hunter, Kathy. / INTERNATIONAL RETT SYNDROME ASSOCIATION. -- Clinton, Md: International Rett Syndrome Association, 1999. 320p

Written by a parent, who is also the founder and President of the International Rett Syndrome Association, this is an invaluable handbook for parents. Informative and personal it covers many topics including day to day management, motor problems, treatment options, education, communication, nutrition and feeding.

SC/RET HUN [P09569]

Scoloisis in Rett syndrome / Leonard, Helen et al. / TELETHON INSTITUTE FOR CHILD HEALTH RESEARCH. -- West Perth: Telethon Institute for Child Health Research, 2009. 23 p. ; 30 cm.

This booklet is a collaboration between parents, clinicians and researchers and is designed to outline some recommended managment guidelines for scoliosis in Rett syndrome and provide the relevant background for parents and clinicians. First hand accounts from parents have also been gathered and provide knowledge, understanding and experience in relation to different aspects of management of scoliosis in Rett syndrome. Available online at

SC/RET SCO [P14412 ]

Silent angels : the Rett Syndrome story / INTERNATIONAL RETT SYNDROME ASSOCIATION. International Rett Syndrome Association, 2000. 1 DVD (50 mins.)

As well as being a fascinating account of the discovery of the gene responsible for Rett syndrome, this video shows families of girls with Rett syndrome telling their stories. The major symptoms and the four stages of development that girls with the syndrome typically pass through are described. Julia Roberts is the host and narrator. Also available online at

SC/V RET SIL [P09801]

Understanding Rett Syndrome : a practical guide for parents, teachers and therapists / Lindberg, Barbro. -- Toronto: Hogrefe & Huber, c1991. 171p.

This book looks at the psychological and educational aspects of children with Rett syndrome. Provides a general outline of the syndrome, an account of typical symptons and behaviours and some guidelines for treatment and teaching.

SC/RET LIN [P07436]