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
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
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
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
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
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
(See also under infants, children and adolescents and adults)
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
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
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
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
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
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.
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
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.
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).
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.
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.
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.
A Healthy Approach to Cooking with Equal. A wide range of
practical recipes for biscuits, slices, cakes and desserts using Equal
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
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
Bedwetting: A Manual for Parents. Written by Jan Matthews and produced
by Ramsay Coote instruments, this booklet examines the problem and the
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
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.
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.
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
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!
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
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
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 youre 64.