The Genetics of Prader-Willi Syndrome and the possibilities of recurrance in the Family. Dr Tessa Webb.1993. A leaflet about the genetic background to Prader-Willi Syndrome

Nursing Management by Geraldine M. DiCosimo, M.S., R.N., C.S, Primary Care Clinical Nurse Specialist, Adult Nurse Practitioner. Published by the PWSA (USA) this booklet covers nursing care and management of the first and second phase of the syndrome. It also covers clinical findings.

Parent's Guide to Alternative Living Arrangements by Mildred Lacy. Provides guidance as to what to look for in selecting an alternative living setting.

Beyond the Veneer. Editor Jackie Waters.1997. A guide to the essential features of residential care and supported living for adults with Prader-Willi Syndrome.

Residential Care and Supported Living Forum. 1997. Notes from this day.

Australian Disability Review 4-96. This includes an article written by Ellie Smith entitled: "The Disability Associated with Prader-Willi Syndrome".

Exercise and Craft Activities - A Collection of Articles (Compiled in 1998). Contributions by Jennifer C Deau, MS, Exercise Physiologist, and other articles on muscle tone, upper body strength, exercise and craft activities for the individual with PWS from infancy to adulthood.

Behaviour Management - A Collection of Articles (Compiled 1998). This booklet includes general articles on behaviour concerns, use of psychotropic medications, skin picking and social skills teaching.
Growing Up with Prader-Willi Syndrome- Personal Reflections of a Mother. A collection of articles by Janalee Tomaseski-Heinemann, tips for managing family life on a practical level.

Growing Up with Prader-Willi Syndrome- Personal Reflections of a Mother. Janalee Tomaseski-Heinemann. A collection of articles.

For the Love of Christie - About acquired PWS. Book by Loraine Zarr about her daughter Christie who had "acquired" PWS after the removal of a brain tumour. Moving story about the family's struggle with this outcome and Christie's subsequent death.

Prader-Willi Syndrome: The Best of the Training Days. Edited by Alexandra Williams, Jackie Waters. Just as the title says – lots of great papers presented on various aspects of PWS.

The Home Host Scheme. James Stanley Kirk and Deborah Ann King.1999. This paper reports on a case study in which a person with PWS has lived with a host family for over 3 years. The positive outcomes for this young man, the impact on him, and the maturity he has shown in dealing with the changes in his lifestyle are also discussed.

Exercise and Craft Activities - A Collection of Articles (Compiled in 1998). Contributions by Jennifer C Deau, MS, Exercise Physiologist. Articles on muscle tone, upper body strength, exercise and craft activities for the individual with PWS from infancy to adulthood.

Health Care Guidelines for Individuals with Prader-Willi Syndrome. 1998. A resource for professionals and an aid to families and other caregivers. This is based on expert opinion of physicians and other care providers who have substantial experience with PWS.

(See also under infants, children and adolescents and adults)
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Fat Countdown to Better Health & Performance by Heather Carmichael, MSc, NZRD, Research Dietician & Sports Nutritionist.

Food and Health by Margaret Gellatly SRD. This book from the UK was developed as a result of requests for dietary help directed to the PWSA (UK). It provides nutritional and dietary advice for children, teenagers and adults with PWS.

Diet and Nutrition - A Collection of Articles from the Gathered View. Tips from parents, and recipes.

Nutrition Care for Children with Prader-Willi Syndrome by Karen H. Borgie, MA, RD. Quite a good common sense guide for children aged 3-9 years.

Nutrition for Adolescents and Adults with Prader-Willi Syndrome. Karen H Borgie, MA, RD.1995. Published by the Prader-Willi California Foundation this booklet presents tools and guidelines for setting realistic weight goals and planning a nutritional care plan that can easily be followed.

Weight Control and Suggestions to assist with Weight Management. Margaret Gellatly SRD. 1991.

Some Notes for Dietitians. Margaret Gellatly SRD.1991. Leaflet

The Australian Guide to Healthy Eating. Kellett, Smith, Schmerlaib. 1998. This guide is primarily concerned with physical health. Its purpose is to provide information about the kinds of foods to choose in your diet each day.

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Prader-Willi and You by Duno, During and Jeffers. A lighthearted "workbook" for children with PWS. Deals with feelings, diets and activities. Includes controlled calorie plans with food exchange coupons (some USA food items may not be familiar to Australians).

Children with PWS: Information for School Staff by K Levine PhD and R Wharton MD. Produced for school staff, this booklet would also be of benefit to parents and anyone else dealing with PWS on a day to day basis. It goes through the learning and behavioural strengths of children with PWS and provides strategies for dealing with the more challenging aspects in order to maximise the child's potential.

Directions. This book was designed specifically for parents and families of young, recently diagnosed PWS children. It provides support and information about PWS and talks about various methods of early intervention from infancy to early school years.

Choosing Child Care. A Parents Guide. The aim of this booklet is to help you to assess your needs, and then choose an arrangement that will best meet the needs of both your family and your children.

Developmental Delay: An Information Guide for Parents. Published by the Royal Children's Hospital. This booklet describes developmental delay, and gives information about assessment: how it may help the family and how it can be used to assist children with appropriate services.

Physical Therapy Intervention for Individuals with Prader-Willi Syndrome. (PWS Information series No. 2) More for children with PWS, this booklet addresses physical therapy intervention to assist the child in attaining their age-maximum functional abilities.

Prader-Willi Syndrome and the Younger Child. This book has been compiled by the PWSA(NZ) using sources from the PWSA (UK) and the PWSA(USA). It is a useful book that includes photos of some of the New Zealand children with PWS.

Babies and Children with Prader-Willi Syndrome. Jackie Waters, Margaret Gellatly.2001. A handbook for parents and carers, this is a revised edition of the excellent book "Prader-Willi Syndrome and the Younger Person".
 
The Child with Prader-Willi Syndrome: Birth to Three. By Robert H. Wharton, MD, Karen Levine,Ph. D., Maria Fragala, PT, Deidre C. Mulcahy, MS, CC-SLP. This is book No. 3 in the Prader-Willi Perspectives, PWS Information Series. It is intended to help parents as well as early intervention workers, Doctors and other care providers. It provides a comprehensive overview of these years with recommendations for optimum care - it is a terrific handbook for parents of those under three.

Going to School: The Move from Preschool to School for Children with Disabilities. Published by Specialist Children's Services Unit, Youth and Family Services Division, Victorian Government Department of Human Services. This booklet contains information on a range of school options and suggests points to consider when making a decision about what best suits your child.

The Early Years - (Compiled in 1998). A collection of articles regarding young children with PWS - many from a parent's perspective.

Supporting Inclusive Schooling – Resources to Support the Integration of Students with an Intellectual Disability in Regular School. Viki Hain and Esther Harris.1996. Book 1 – Learning about People with an Intellectual Disability; Book 2 – Inclusive Schooling; Book 3 – The Integration Aide – A Handbook; Book 4 – The Integration Teacher – Guide for Schools; Book 5 – Taking the Next Step – A Guide for Parents; Book 6 – Classroom Strategies for Inclusive Schooling.

Information for School Staff. 1993. Leaflet.

Transition from School to Adult Services in PWS: What Parents need to Know. Julie A Seguin, MS, CRC, Robert M Hodapp, Ph D. This booklet helps you to understand what transition is, who provides services (only for the USA), and what you as a parent will need to do.

Supporting the Student who has PWS - Across their Life Span. Professionally produced tape about PWS specifically designed for teachers. Includes a 27 minute tape, with an accompanying worksheet about PWS related issues and interventions for school staff, and the "What educators should know brochure."

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Prader-Willi Perspectives. Now defunct. A Journal of Prader-Willi Syndrome Information for Parents & Professionals.

The Gathered View. From 1981. This is the national newsletter of the PWSA(USA). There are six issues published every year.
News. The national newsletter of the PWSA(UK). There are four issues published every year.

Wavelength. From Volume 1, Number 1, December 1992. The International Prader-Willi Syndrome Organisation Newsletter for parents by parents. There is also a newsletter for professionals, which has now been included in the Wavelength publication.

News.PWSA(UK). Quarterly. National Newsletter of the PWSA (UK).

Pickwick Papers. National Newsletter of the Prader-Willi Syndrome Association of New Zealand. Published quarterly.


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A Handbook for Parents & Carers of Adults with PWS by Jackie Waters. This is a revised edition of "Prader-Willi Syndrome and the Older Person". This is an excellent book for parents of adults and for anyone who deals with people with PWS on a regular basis. Deals with the practical problems involved with managing the syndrome in the older person.

Report on a Questionnaire to Parents of Adults and Teenagers with Prader-Willi Syndrome. From the PWSA(UK), includes data on eating and weight problems, behavioural and psychological problems, education and employment, everyday life, relationships and the problems which parents face.

Nutrition for Adolescents and Adults with Prader-Willi Syndrome by Karen H Borgie, M.A., R.D. Published by the Prader-Willi California Foundation this booklet presents tools and guidelines for setting realistic weight goals and planning a nutritional care plan that can easily be followed.

Transition from School to Adult Services in Prader-Willi Syndrome: What Parents need to Know. Written by Julie A Seguin, MS, CRC, Robert M Hodapp, Ph D. This booklet helps you to understand what transition is, who provides services (only for the USA), and what you as a parent will need to do.

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Video of 1994 Australasian Conference (held in South Australia). A set of three videotapes, they cover the conference held in Handorf over the weekend of the 1st and 2nd of October.

Videotape of Lecture by Barbara Whitman (held at Melboume University in October 1994. Dr.Whitman has had many years experience in the USA in working with people with PWS and she spoke about the behavioural and emotional dimensions of PWS and how best to manage these dimensions, both behaviourally and with medication".

Children with Disabilities. Toddler Taming - Volume Six. Written and presented by Dr Christopher Green. In this video Dr Green looks at the particular problems and concerns that face parents and relatives of the disabled child. In particular he talks to families who have found their own solutions that work for them.

Medical Overview "Searching for Solutions". Multipurpose video produced for the PWSA (USA).

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Sometimes I'm Mad, Sometimes I'm Glad . . . on being a Prader-Willi family by Janalee. Siblings children's book. Printed in block handwriting, with photos and drawings, and written in the first person by the sister of a boy with PWS. Produced to promote discussion on dealing with a brother or a sister with PWS. 

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Abstract Book from the 2nd Prader-Willi Syndrome International Scientific Workshop and Conference. This book contains a synopsis of all the papers presented at this conference in Oslo.

6th Australasian Prader-Willi Syndrome Conference: 1-3 November 1996. Program, Abstracts and Overviews.

Conference Program and Abstracts for Australian Early Intervention Association (Victorian Chapter) 13th Annual Conference 1997. The title of the conference explains the subject matter within this document -"How do you do . . . and how do you do it? - helping young children with disabilities make friends and build social networks".

Abstract Book from the 4th Prader-Willi Syndrome International Scientific Workshop and Conference. 2001. This book contains a synopsis of all the papers presented at this conference in Minnesota, USA.

Conference Program & Abstracts from the 7th Australasian PWS Conference. 26-28 March 1999. Program, Abstracts and Overviews.

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Supporting the Student who has PWS - Across their Life Span. Professionally produced tape about PWS specifically designed for teachers. Includes a 27 minute tape, with an accompanying worksheet about PWS related issues and interventions for school staff, and the "What educators should know brochure."

Carer's Talk and Carer's Relaxation. A cassette tape and leaflet on looking after yourself.

Audio Tapes of Sessions from the 6th Australasian PWS Conference - Auckland - November 1996. This is a set of 6 cassette tapes covering most of the conference.

Vocal Warm Up Audio Tape and accompanying material. This was produced by Annika Davey for commercial use but it is similar to a program she used early on with her daughter who has PWS.

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A Healthy Approach to Cooking with Equal. A wide range of practical recipes for biscuits, slices, cakes and desserts using Equal low-joule sweetener.

Margaret Fultons Book of Slimming. A recipe book with chapters on Soups and Starters, Fish, Poultry and Meat, Egg and Cheese Dishes, Vegetables and Salads, and Desserts, all with calories per portion.

Recipe for Good Health. 1997. Recipe ideas for controlling weight, diabetes, cholesterol and high blood pressure

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Snoring, Sleep Apnoea and Other Sleep Problems by Dr Matthew Naughton and Dr Rob Pierce. This booklet describes the common sleep problems, diagnostic tests and the treatment options that are available. It provides a list of self help and support groups and advice on the facilities and hospitals around Australia that specialise in the investigation and treatment of sleep disorders.

Bedwetting: A Manual for Parents. Written by Jan Matthews and produced by Ramsay Coote instruments, this booklet examines the problem and the treatment available.

Psychotropic Drug Use and People with Disabilities by Meg Montague. Research study undertaken on behalf of the Office of the Public Advocate and the Addiction Research Institute of Vic. Published April 1990.

Compic Pictographs Brochure. Compic is a visual resource that can assist with the acquisition of alphabet, spelling and word recognition skills as well as other whole language skills.

Growth Hormone (Compiled in 1998). Articles of interest from 1993~1998 including the Policy Statement of the Scientific Advisory Board of PWSA (USA).

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Through the Maze: A Guide to Benefits and Services for Families of Children with a Disability. Published by the Association for Children with a Disability this booklet covers the various forms of financial assistance that is available.

Helping You and Your Family - A Self-Help Guide for Families of Children with a Disability. Published by the Association for Children with a Disability this booklet has been written by parents for parents. It looks at problems and issues faced from day one - searching for a diagnosis, becoming familiar with the service system and learning to take charge of the situation.

A guide to families wishing to make legal provision for a learning disabled member. Anthony Quinn & Company.1997. Whilst this book covers the UK legal and welfare system there are pertinent things to be learned for any parents

A Guide to Your Local Health Services. 2000. A guide to services in your local area. These range from hospitals and community health services to support services such as neighbourhood houses and counselling.

Eloura Homes Inc: Notes from the "Planning for the Future" Seminars. Information to assist families in planning for the future of an adult family member with an intellectual disability who is still living at home.

Sport & Recreation Industry Directory 1998. This guide includes the "Guide to Sport and Recreation Disability Organisations".

Write Focus: Persuasive Proposals and Submissions. A how to guide for writing proposals and submissions.

Knowing the Ropes.Various.1998. The Essential Guide to Business Issues for Non-Profit Organisations.

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Thinking Ahead: An Introduction to Wills and Estate Planning for Parents of Children with an Intellectual Disability - 2nd Edition by Alan Rassaby, Robert Juckes and Andrew Gagalowicz.

Fact Sheets from the Office of the Public Advocate:
- Medical Enduring Power of Attorney 
- Administration (appointing an administrator) 
- Financial Enduring Power of Attorney 
- Guardianship
 
Brochures from the Office of the Public Advocate: 
- Working Alongside People with a Disability 
- Independent Third Person Program 
- Community Visitors Program 
- Community Guardianship Program 
- Guardianship and Administration

Tables for the Assessment of Work-related Impairment for the Disability Support Pension. What more can I say!

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Grief and Loss - The Pain of Caring. A booklet from the Carers Association Victoria. This brochure aims to assist people who have lost a loved one come to terms with some of the challenges they face.

You and Stress by Dr. Bob Montgomery and Lynette Evans The sub-title of this book is "How to develop new coping skill and a healthier lifestyle", which I'm sure many of us would like. It also deals with issues such as becoming more assertive, time management, insomnia, depression and loneliness.

Uncommon Fathers - Reflections on Raising a Child with a Disability. Edited by Donald J. Meyer. A collection of essays by fathers who were asked to reflect and write about the life-altering experience of having a child with a disability. This is a wonderful book for anyone to read - but especially for fathers.

Getting the best out of your GP. This is a transcript of the presentation Dr. Bob Davis gave to the PWSA of Victoria at the 1994 Annual General Meeting.

Helping You and Your Family. 1999. This book has been written by parents, for parents.It looks at problems and issues faced when searching for a diagnosis, becoming familiar with the service system and learning to take charge of the situation.

To Parents of Children with Special Needs. From Parents of Children with Special Needs. These set of 7 booklets are quite old now but they still contain some relevant information. Titles of the booklets are: Finding out, The earlier the better, The professionals, Getting together, Family matters, What about school, When you’re 64.