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Books and Booklets on Prader-Willi Syndrome From PWSA(USA)
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Click on the title of the booklet or cover photo to see a summary or table of content
of each booklet. To order, click on the Order Form button, print out the Publications order form, fill it out and send it to the address
printed on the form or call the National Office at 1-800-926-4797.
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Supportive
Living Care Plan for An Adult with Prader-Willi
Syndrome
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A
Nutritional Guide for Parents of Children with
Prader-Willi Syndrome ages 3-5 years |
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Dinah's Story
By Loretta Stafford
Dinah's Story is an exploration of the impact on one
individual and one family of having a child with
Prader-Willi syndrome. $10.00/member and $15.00
non-member.
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(click here for more) |
Handbook
for Parents (Revised 1999)
Written by Shirley Neason in 1978, with subsequent revisions by members of the PWSA
publications committee. Parent-to-parent handbook for understanding and managing issues
related to PWS. Covers all ages; includes food exchange lists for diet management.
Soft-cover, 74 pages, B& W photos. $10.00 ($7.00 members)
Handbook for Parents (en Espanol)
Same as above, without latest revision, in Spanish. $6.50 ($4.00 members)
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(click here for more) |
The Child with
Prader-Willi Syndrome: Birth to Three (Revised 1999)
by Robert H. Wharton, M.D., Karen Levine, Ph.D., Maria Fragala, PT, Deirdre C. Mulcahy,
M.S., CC-SLP; Center for Prader-Willi Syndrome and Related Disorders Spaulding
Rehabilitation Hospital, Boston, MA. Soft cover, 34 pages. $5.00
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(click here for more) |
Physical Therapy
Intervention For Individuals With Prader-Willi Syndrome
by Maria Fragala, PT; Center for Prader-Willi Syndrome and Related Disorders Spaulding
Rehabilitation Hospital, Boston, MA. Robert H. Wharton, M.D., Karen Levine,
Ph.D.,Co-Directors. Soft cover, 11 pages. $4.00
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(click here for more) |
Transition From
School To Adult Services in Prader-Willi Syndrome: What Parents Need to Know
by Julie A. Seguin, M.S., CRC, Robert M. Hodapp, Ph.D.; UCLA Graduate School of
Education & Information Studies Los Angeles, CA. Soft cover, 65 pages. $15.00
(members $10.00)
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(click here for more) |
Children with
Prader-Willi Syndrome: Information for School Staff
by Robert H. Wharton, M.D., Karen Levine, Ph.D.; Center for Prader-Willi Syndrome and
Related Disorders Spaulding Rehabilitation Hospital, Boston, MA. Margaret E. Comeau,
Prader-Willi Syndrome Association of New England. Soft cover, 23 pages. $7.50
(members $5.00)
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(Click here for more) |
The Early Years
This collection of articles is designed to help the families of
young children with PWS see what is happening in the lives of other children who have also
received early diagnosis. There’s no getting around the fact that PWS is a serious
issue. But there are so many types of treatment available today that were not available
even a few years ago that we cannot help but be optimistic about the future. Through the
telling of stories, these parents of young children hope to increase the awareness
of the treatment options that are available. Spiral bound, 37 pages. $7.50 ($5.00
member)
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(Click here for more) |
Behavior
Management For Persons With Prader-Willi Syndrome: A Collection of Articles
This booklet includes material on behavior management culled from issues of the
The Gathered View, the newsletter of the Prader-Willi Syndrome Association (USA), as well
as other sources. Main topics covered are general concerns on behavior, use of medications,
skin picking, toileting, and teaching social skills. Spiral bound 49 pages. $8.50
($6.00 member)
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(Click here for more) |
Planning for
Their Future: General Estate Planning for Families of Persons with Prader-Willi Syndrome
This collection gives valuable information on estate planning essentials for
families of persons with Prader-Willi syndrome. Covers topics of
Estate planning basics, wills, trusts, letters of intent, guardianship, and explains much
of the terminology that is used in estate planning. Spiral
bound 30
pages. $8.50 ($6.00 member)
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(Click here for more)
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Exercise and
Crafts & Activities for the Individual with Prader-Willi Syndrome.
This booklet includes material on exercise culled from issues of the The
Gathered View, the newsletter of the Prader-Willi Syndrome Association (USA), as well
as other sources. Also included is material on activities and crafts, which can be
closely related to exercise. Spiral bound 44 pages. $8.50 ($6.00 member)
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Sometimes I'm Mad, Sometimes I'm Glad - rewritten 2005
Written by Sara in the voice of a sibling of someone with PWS.
Recognizes the range of feelings that are involved in having a brother or sister with the
syndrome. Helpful for parents and siblings. Soft-cover. $7.50 ($5.00 member)
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Prader-Willi &You
Written by Patricia Duno, Ann During, and Janet Jeffers.
A booklet for those with PWS who are having difficulty with diet and behavior. The main
character, Jamie, helps the reader understand that having PWS means having to learn
special things about feelings, activities, and diet. Includes complete diet information, a
food ticket system to control diet, and tips on behavior, exercise, and activities.
Soft-cover. $6.50 ($4.00 members)
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