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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

   
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

   
P.C

233

 

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.

15.00

20.00

   
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

   
E,P,C 224

 

(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

   
E,P,C 232

 

(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

   
P,C,M 228

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.

8.00

10.00

   
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  

6.00

8.50

   
P128

 

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

   
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

   
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.

 50.00

 75.00

   
P-6+ 120

 

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

   
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

   
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

   
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

   
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

   
P-3+ 105

 

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

   
P-9+ 119

 

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

   
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

   
P,E,C,M
101

Overview of the Prader-Willi Syndrome (Revised 2003) by Lota Mitchell, M.S.W.  Short introduction to the syndrome for professionals and parents.. Softcover, 13 pages. 

4.00

6.50

   
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

   
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

   
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

   
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

   
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 eachShipping included

3.00

3.00

   
140

P,C,M

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

   
P, S, 138 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

   
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

   
P, C 103 Supporting Adults with Prader-Willi Syndrome in Residential Settings (2008) by B. J. Goff - Focus of the manual is primarily on group homes and their residential programs but the contents may also be used as part of a specialized training program in Prader-Willi syndrome.  Required reading for all caregivers involved with clients with PWS.  Soft cover booklet, 78 pages – Order 2 or more at $12.00 each

15.00

15.00

   
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.

20.00

25.00

   
P,C

PWS 236 

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.

10.00

15.00

   
P, C 223 Cards for Restaurants  Designed to be given out to restaurant wait staff (to ask that no extra food be offered). Pkg. 10 for $4.00    

4.00

4.00

   
P. C

222

Cards for Legal Situations – For Law Enforcement Personnel
In case police ever become involved in a behavior or food incident).  Pkg. 4 for $2.00

2.00

2.00

   
 

 

 

 

   
 

DVDs, CDs, & Videos

 

 

   
P,C,
PWS
968

“I Ain’t Trippin” Rap CD from the 2007 National Conference in Dallas, TX
and
“My Name’s Not Willy” Rap CD from the 2003 National Conference in Orlando, FL.

5.00

5.00

   
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

   
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

   
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

   
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

   
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

   
P,E

205

“Searching for Solutions” (2000) Multi-purpose DVD created by award winning producers and graphic artists.  Touches on many areas of PWS, such as what it is, its cause, behavior, emotional and family issues, early intervention, residential placement.  16 minutes

15.00

20.00

   
C

207

Staff Training – “Understanding Prader-Willi Syndrome” DVD - Good practical advice for individuals who work with persons who have PWS.  Designed to train service provider staff on the needs of individuals with PWS.  18 minutes

10.00

15.00

   
P,E,C

212

“Tribute to PWS Children from Around the World” DVD produced by Mark Ryan, parent.  Beautiful pictures of children with PWS of all ages set to music.  10 minutes  

10.00

10.00

   
E, C, P

242

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

   
P,E,

PWSC

967

Working Out – Big Willy Style (2005) DVD by Tad Tomaseski and crew.  A workout designed  for a person with PWS.  It has been designed to strengthen all muscle groups and increase cardio-muscular capacity…and it is fun!  A second DVD is in the works for the more obese, less mobile person with PWS.
Click here to view demo

15.00

20.00

   
 

 

 

 

   
P, E, C, M

For all

Brochures

(Single copies are FREE.)

Multiple-copy prices: $0.25 each for 2–20;  $0.20 each for 21–100;  $0.15 each for more than 100

 

 

   
112.5

Helping with Diet Management  - Children with Prader-Willi Syndrome at School   A guide for parents and educators. 

   
116

Management of PWS in the Work Setting: A Guide for Employers and Supervisors Emphasizes careful supervision and consistency as keys to success; includes tips and strategies and a brief overview of the syndrome.

   
110.2

Medical Reference Guide: A Diagnosis and Reference Guide for Parents & Caregivers  Summary in chart form for parents and caregivers who need a quick introduction to PWS.

   
108

My Child Has PWS—Now What?  Support and information for families of newly diagnosed infants and children.

   
111

Prader-Willi Syndrome Weight & Behavior Management  Suggested Do’s and Don’ts for controlling the two major problems associated with PWS.

   
109

Someone You Know Has PWS  Basic information for relatives, friends, neighbors, and others in contact  with people with PWS.

   
114

Speech and Language and Prader-Willi Syndrome Summarizes speech problems associated with PWS and recommends ways to locate a speech-language pathologist to assist a child of any age.

   
116.5

Shelly has Prader-Willi Syndrome, where dieting is a lifetime struggle and food is a killer  For use where dramatic impact is needed, e.g., on legislators or decision-makers. Not recommended for parents of young children.

   
107

Questions and Answers on Prader-Willi Syndrome  Basic information about PWS for anyone unfamiliar with the syndrome.

   
113 What Educators Should Know about PWS Offers guidelines and strategies for helping the student with PWS stay focused, develop skills and knowledge, and minimize problems associated with the syndrome in the school setting.    
 

Literatura en Español

(B) Precio de FOLLETO una copia es gratis.

Mas de una copia el precio de: 2 a 20; el precio es : $0.25 de 21 a 100;  el precio es $0.15)

 

 

   
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

Available with Spanish Sub-Titles

25.00

30.00

   
100.1

BOOK - GUIA PARA FAMILIAS Y PROFESSIONALES EL SYNDROME DE PRADER-WILLI   Comprehensive management book. Written in Spanish, each chapter is written by a specialist on the particular topic. Excellent reference tool.  Reprinted thanks to ASOCIACION ESPANOLA PRADER-WILLI. Softcover; 400 pages. REDUCED

10.00

15.00

   
100.2

CD - GUIA PARA FAMILIAS Y PROFESSIONALES EL SYNDROME DE PRADER-WILLI

15.00

20.00

   
123.2 BOOKLET - SINDROME DE PRADER-WILLI: GUIA PARA, FAMILIARES Y PROFESIONALES (Revised in 2003) An overview booklet for parents and professionals. Softcover, 16 pages. Written by Moris Angulo, M.D. 

2.00

3.00

   
110.3 (B) FOLLETO – UNA GUIA DE REFERENCIA MEDICA  Summary in chart form for parents and caregivers who need a quick introduction to PWS. (Medical Reference Guide: A Diagnosis and Reference Guide for Parents & Caregivers)    
111.1 (B) FOLLETO – EL SINDOME PRADER-WILLI CONTROL DE PESO Y COMPORTAMIENTO.  Sugestiones de lo que se debe hacer y no hacer para controlar los mayores problemas asociados con PWS (Prader-Willi Syndrome Weight & Behavior Management)    
107.1 (B) FOLLETO- PREGUNTAS Y RESPUESTAS SOBRE EL SINDROME PRADER-WILLI

(Questions and Answers on Prader-Willi Syndrome )

   

 

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PWSA (USA), 8588 Potter Park Drive, Suite 500, Sarasota, FL 34238
Or fax charge orders to:  (941) 312-0142

For additional information:  (800) 926-4797 or (941) 312-0400

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  * Note: Several other materials are available including books written from parents/personal perspectives.  For a complete order form contact PWSA (USA) 1-800-926-4797 or revisit this page often.

  

Mail order form with payment to:
PWSA (USA), 8588 Potter Park Drive, Suite 500, Sarasota, FL 34238
Or fax charge orders to:  1-941-312-0142
For information, call:  800-926-4797 or 941-312-0400
All Orders Are Shipped Via USPS
Text Box: Last Revision July 22, 2002

 Please Call For Overnight Requests.

 

edited: 06/22/2009

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