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Coding
for Reader Recommendations
P =
Parents/grandparents/guardians, all age levels
P-3 =Parents/guardians, infants and toddlers
P-5 = Parents/guardians for age 0 -5
P-6-12 = Parents/guardians age 6 and up
P-13+= Parents/guardians, teens and up
E = Educator
C = Caregiver/therapist/group homes/assisted apt/workshop,
shelter
M= Medical professionals
PWS = Persons with PWS
S = Siblings
Q = Material is very graphic and may not be appropriate for new
parents |
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P, S, 138 |
NEW!
See Me, Hear Me, I’m Here, Too (2006) A book
about siblings, for siblings, and by siblings who have a
brother or sister with PWS. Softcover booklet, 76 pages
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10.00 |
15.00 |
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P, E 219 |
Behavior Management – A Collection of Articles (2003)
This booklet includes general articles on behavior concerns,
use of psychotropic medications, skin picking, and social
skills teaching. Softcover booklet, 49 pages |
6.00 |
8.50 |
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P 137 |
Big
Smiles and Small Miracles (2006) by Lynne M.
Caulkett - Inspirational stories about children that are
challenged by various disorders; Maria Christine Vucci is
featured; young readers, as well as adults, will enjoy this
collection of short stories autographed by the author. |
20.00 |
25.00 |
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P-3 227 |
Child
With Prader-Willi Syndrome: Birth to Three (Revised
2004) by
Robert H. Wharton, M.D., Karen Levine, Ph.D., Maria Fragala,
PT, Deirdre C. Mulcahy, M.S., CC-SLP. This booklet discusses
the common concerns of the first three years and offers
specific recommendations for early intervention strategies.
A helpful and positive resource for families, physicians,
early intervention worker, and other care providers.
Softcover, 34 pages |
5.00 |
7.50 |
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P.C 233
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Cookbook by Donna
Unterberger. (2003)
Cookbook for the PWS Diet
filled with low-fat, low-sugar recipes designed to be used
by the whole family. Great substitution list, fun snack
recipes, mealtime tips, full nutritional values calculated
for each recipe. Can be used by anyone wanting to lose
weight while eating nutritious, interesting food. |
20.00 |
25.00 |
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P-5 130.8 |
Early
Years Booklet (1998) A collection of
articles regarding young children with Prader-Willi
syndrome--many from a parent’s perspective. Softcover
booklet, 37 pages |
5.00 |
7.50 |
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E,P,C 224
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(Educator’s Resource Packet) – Pupils Wanting
Success:: Resources for Those Who Support Students with
Prader-Willi Syndrome (2003) by Barbara Dorn and
Barbara J. Goff, Ed.D. This packet is a resource for an
educator that includes the Teacher’s Handbook for the
Student with PWS, an accompanying worksheet about PWS
related issues and interventions for school staff as well as
related Gathered View articles. |
14.00 |
19.00 |
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E,P,C 232
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(Educator’s Resource) only the Teacher’s Handbook for the
Student with PWS (2003) from Educator’s
Resource Packet- The Student with PWS. A resource book for
educators. Important for all who work with these students
to gain knowledge about this disorder as well as the many
factors that influence their learning. This resource manual
will provide teachers with valuable information to assist in
working with students of all abilities. |
10.00 |
15.00 |
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P,C,M 228.8 |
Everyone’s Essential Almanac (2006)
– (replaces
“Health and Medical Issues”) A collection of
articles for the individual with Prader-Willi syndrome.
Softcover booklet, 119 pages. |
10.00 |
15.00 |
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P,C,E 220 |
Exercise
and Crafts & Activities – A Collection of Articles
(1998) Contributions by Jennifer C. Deau,
M.S., Exercise Physiologist, and other articles on muscle
tone, upper body strength, exercise, and crafts and
activities for the individual w/PWS. Softcover, 44 pages
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6.00 |
8.50 |
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P
128 |
Growing Up with Prader-Willi
Syndrome: Personal Reflections of a Mother.
(Revised 2003)
A collection of 17 articles by Janalee Heinemann.
Tips for managing family life on a practical level.
Softcover booklet, 37 pages. |
5.00 |
7.50 |
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P, C, M 235 |
Growth Hormone and Prader-Willi Syndrome
by Linda Keder with
Don Goranson as production coordinator (2001)
Reference for families and care providers. Member of
Scientific Advisory Board, endocrinologist Dr. Phillip Lee
states: “this publication is by far the best monograph on
growth hormone for any condition I have ever seen.”
Softcover, 52 pages |
5.00 |
10.00 |
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P
123 |
Handbook for Parents by Shirley Neason,
(Revised 1999) A comprehensive booklet, with pictures,
that covers birth to adulthood. Parent-to-parent handbook
for understanding and managing issues related to PWS.
Softcover, 75 pages |
7.00 |
10.00 |
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M,C,
100 |
Management of Prader-Willi
Syndrome, Third Edition, Springer –
(2006) Edited by
Merlin G. Butler, MD, PhD, Phillip D.K. Lee, MD, and Barbara
Y. Whitman, PhD, Hardcover, 550 pages. Latest edition of the
only comprehensive textbook on PWS in print. Excellent
reference tool for professionals and service providers.
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50.00 |
75.00 |
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P-6+ 120
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Michael and Marie
(2003)
by Valerie Rush Sexton and Debbie Erbe Fortin, both
teachers, and illustrated by Bonnie Branson. Addresses a
void in the educational system as there are no story books
about Prader-Willi syndrome. The story is designed to be
read to elementary school age children. Classmates of
special needs children need to be educated to understand and
even help create a friendly and safe environment for all
children. |
8.00 |
10.00 |
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P-6+ 124 |
My Daughter Has the
Prader-Willi Syndrome – What do I do? (2003)
By Carlos Molinet Sepulveda. A Chilean father searches with
love and perseverance for answers about his daughter, born
in 1988 with PWS in a country with no knowledge or resources
on PWS. |
10.00 |
12.00 |
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P 108.1 |
My Grandchild has
Prader-Willi Syndrome: Now What? (2007
update) Booklet written for grandparents by
grandparents Barb McManus & Michele Leightman; softcover/16
pgs |
5.00 |
7.50 |
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P-5 234 |
My Ragdoll by
Cheryl Couch (2000) from a Christian perspective.
Cheryl shares her emotional roller coaster when her angel
Elana is diagnosed with PWS. From birth to age 6.
Softcover, 229 pages |
16.00 |
18.00 |
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P-3 105.2 |
Nutrition Care for Children with PWS, Infants and Toddlers
(Revised 2004) by Janice Hovasi Cox, MS,RD and
Denise Doorlag, OTR; consultants Dr. James and Carolyn
Loker; edited by Linda Keder. Provides answers to
frequently asked questions about nutrition and feeding of
infants and toddlers with Prader-Willi syndrome. Softcover,
62 pages |
7.00 |
10.00 |
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P-3+ 105
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Nutrition Care for Children with PWS, Ages 3-9 (2003)
by Karen H. Borgie, M.A., R.D., for the
Prader-Willi California Foundation. Covers calorie needs,
supplements, diet planning and food management, and explains
food exchange lists. Softcover, 12 pages. |
3.00 |
5.50 |
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P-9+ 119
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Nutrition Care for Adolescents and Adults with PWS
(2003) by
Karen H. Borgie, M.A., R.D., for the Prader-Willi California
Foundation. Covers essential diet information for families,
caregivers, and residential service providers. Softcover, 24
pgs |
5.00 |
7.50 |
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P13+ 134 |
Out of Childhood: Our Teens
and Adults with Prader-Willi Syndrome (Revised
(2004) by Lota Mitchell, Mildred Lacy and Janalee
Heinemann. A collection of resources and information to
help guide parents of older children through new and
continued challenges, such as living arrangements, physical
development and sexuality, educational and vocational
training. Softcover, 42 pgs |
10.00 |
15.00 |
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P,E,C,M 101 |
Overview of the Prader-Willi
Syndrome (Revised 2000)
by Lota Mitchell, M.S.W. Short introduction to the
syndrome for professionals and parents.. Softcover, 13
pages.
Revision in progress |
4.00 |
6.50 |
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C,P 225 |
Physical Therapy Intervention
for Individuals with PWS by Maria Fragala, PT;
This booklet provides general information about physical
therapy intervention. Includes copies of articles by
Janice Agarwal, PT and mom of a son with PWS. Softcover, 11
pages |
4.00 |
6.50 |
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P 218 |
Planning for Their Future:
General Estate and Guardianship Planning
(1998)
Compiled
by attorneys for general information and guidance for
families of persons with PWS. Includes wills, basic estate
plans, selecting a trustee, letter of intent, guardianship,
glossary of estate planning terms, and more. Softcover
booklet, 30 pages |
6.00 |
8.50 |
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M, P,C
123.1 |
Prader-Willi Syndrome A Guide
for Families and Professionals (Revised 2005)
by Moris Angulo. 12-page paper containing comprehensive
information about PWS including description, evaluation,
genetics, diagnostic testing, management. |
2.00 |
3.00 |
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P13+PWSC,E 135 |
Prader-Willi Syndrome Is
What I Have Not Who I Am! (2005)
A book of “feelings” written by children and young
adults with PWS collected by Janalee Heinemann. This book
gives an important insight into lives and thoughts of our
people dealing with PWS on a daily basis. A portion of the
book opens the door to journal writing and an opportunity
for the reader with PWS to share their feelings.
Softcover, 70 pages |
10.00 |
15.00 |
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P,M,C,E 106 |
Prader-Willi Syndrome Medical
Alerts (2005)
Important resource for parents to give to their child’s
doctor, ER staff, caregiver, etc. A useful small-sized
handbook, content written by our medical professionals. 20
pages. $3.00 for single copy, orders of 4 or more books
at $2.50 each. Shipping included |
3.00 |
3.00 |
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P
136 |
Prader-Willi Syndrome: Coping
with the Disease – Living with Those Involved (2005)
by Dr. Urs Eiholzer, a distinguished Swiss pediatrician, and
translated from German. Written especially for parents,
includes easy-to-read information, charts and pictures on
such areas as main characteristics, genetic causes,
diagnosis, psychomotor development and intelligence, main
forms of treatment and treatment strategies. Soft cover,
119 pages |
24.00 |
28.00 |
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140 |
Red
Yellow Green: System for Weight Management
(2005) by Karen Balko, RD - This book will give you
calories, cup sizes and visual tips to providing a
structured food plan. A 7-day meal plan is included for
800, 1000, 1200 and 1350 calorie plans. |
20.00 |
25.00 |
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P, S, 138 |
NEW!
See Me, Hear Me, I’m Here, Too (2006) A
book about siblings, for siblings, and by siblings who have
a brother or sister with PWS. Softcover booklet, 76 pages
|
10.00 |
15.00 |
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P 5+
S 121 |
Sometimes I’m Mad, Sometimes I’m Glad – A Sibling Booklet
( Revised 2005) by Sarah Heinemann as told to her
mother Janalee Heinemann. It is in the voice of a sibling
of someone with PWS. Recognizes the range of feelings that
arise in having a brother or sister with the syndrome. Ages
5 – 13 |
5.00 |
8.00 |
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Code P, C * |
Successfully Supporting People with
Prader-Willi Syndrome: A Handbook for Professionals (2007)
by Jo Anne Nugent, of Nugent Training and Consulting
Services. This handbook provides basic information about PWS,
strategies for providing supports in areas related to food,
environmental modifications and specific kinds of services
across the livespan. Especially valuable information
involving the training of staff for supportive living/care
giving situations. 92 pages.
*Canadian members may purchase
through
info@pwsnetwork.ca in order to support that
organization. |
20.00 |
25.00 |
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C,
P13+ 240 |
Supportive Living Care
Plan for Adult with PWS in Placement – BOOK & CD
(2002) This comprehensive
book/CD will help you create a plan that is specifically
designed to help staff and supportive personnel provide
predictable, consistent, and accountable care and advocacy
for the adult with PWS. This is available in both a
notebook format and in a changeable CD format that can be
adapted to explicitly meet the needs of each individual.
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20.00 |
25.00 |
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P,C
PWS236 |
Tool Box of
Hope – For When Your Body Doesn’t’ Feel Good
(2003) by Deva Joy Gouss. Fun and practical ways for
parents and caregivers to help their child express their
feelings, take medicine, get along with others, and make
friends with their disability. Many coping skills put
together in an interactive workbook. Ages 3 to adult.
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20.00 |
25.00 |
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P, C
223 |
Wallet Cards for Restaurants Designed to be
given out to restaurant wait staff (to ask that no extra
food be offered). Pkg. 20 for $2.00 |
2.00 |
4.00 |
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P. C
222 |
Wallet Cards for Legal
Situations – For Law Enforcement Personnel
In case police ever become involved
in a behavior or food incident). Pkg, 4 for $1.00 |
1.00 |
2.00 |
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M, P
230.4 |
2007
Conference - Scientific Abstract Submissions |
10.00 |
15.00 |
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DVDs, CDs, & Videos |
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E, C, P
242 |
NEW! Understanding the
Student with PWS: Strategies for Success (DVD) –
(2006)
Provides teachers with an introduction and overview of
issues associated with PWS; strategies school staff can use
in supporting success of a student with PWS in their
classroom
*
Special Promo: DVD + Educator’s Handbook (#232) for $28.00
– Order #243 |
20.00 |
20.00 |
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Q, P, C,E, M203 |
A Deadly Hunger (DVD) –
(2000)
Five part series of news segments spotlighting
PWS. Overview of syndrome and stresses problems associated
with appetite, obesity, and behavior. |
20.00 |
25.00 |
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P,C,E,M
241 |
Food, Behavior and Beyond –
Practical Management for the Child and Adult with PWS (DVD)
(2005)
by Linda M.
Gourash MD, developmental Pediatrician and Janice L.
Forster, MD, child and adolescent Neuropsychiatrist.
Suggestions on nutrition, food and behavior, cognitive and
behavioral traits and medications; 5 segments – 2½ hours |
25.00 |
30.00 |
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Q, P,
C, E,
M
206 |
Leeza
Show – “Food as an Ultimate Passion and Deadly Curse" –DVD
of broadcast 5/26/98. Sensitive interviewing of
several families of children with PWS with weight and
behavior problems and other issues. Note: predates wide use
of growth hormone. (Price is suggested donation to offset
reproduction costs.) 41 minutes |
15.00 |
20.00 |
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Q,
P13+
C, E
214 |
Maribel – (2004)
DVD of a family’s
struggle with their adult daughter with PWS. Produced by by
Mercedes Rivera, sister of Maribel, and Albert Salaz.
Helpful for families with placement needs who need to show
dramatic impact. |
20.00 |
25.00 |
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Q,
P13+
C, E
214.1 |
Maribel – (2004) VHS of family’s struggle
with their adult daughter with PWS. Produced by Mercedes
Rivera, sister of Maribel and Alvert Salaz. |
20.00 |
25.00 |
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P,C,
PWS
E
966 |
“My
Name’s Not Willy” Rap
CD from the 2003 National Conference in Orlando,
FL. A special RAP CD created especially for children &
adults with PWS to give a message of positive self-esteem,
communicate feelings, & educate others on PWS. A PWS
sibling donated the writing and composing of this CD: Pastor
Tad Tomaseski & his Xcel Team featuring Big Tiny.
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5.00 |
5.00 |
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P 5
210 |
"PWS – The Early Years"
(2002)
VIDEO offering
practical suggestions for those families with a young child
newly diagnosed with PWS. Genetics, early intervention,
medical and family issues are presented, personalized with
family interviews. Although focused on young children, it is
a wonderful resource for schools and families with children
of all ages.
42 minutes |
15.00 |
20.00 |
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M, C
211.1 |
(PAL-European Version)
Prader-Willi Syndrome – An Overview for
Health Professionals (2002) Video |
15.00 |
20.00 |
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M,C
211 |
Prader-Willi Syndrome – An Overview for Health Professionals
(2004)
DVD
This outstanding medical overview is a must for all health
care professionals who are not “experts” on Prader-Willi
syndrome. It deals with all the major genetics and health
care issues of the child with PWS. 35 minutes |
15.00 |
20.00 |
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