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Prader-Willi Syndrome Association (USA)
Publications and Products
(800) 926-4797
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cbeles@pwsausa.org
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www.pwsausa.org
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PWSA
Member
Price |
Non
Member
Price |
No.
of
Items |
Total
Cost |
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* Coding for Reader
Recommendations
P =
Parents/grandparents/guardians, all age levels E = Educator
P-3 =Parents/guardians,
infants and toddlers M = Medical
professionals
P-5 = Parents/guardians
for age 0 -5 PWS = Persons with PWS
P-6-12 = Parents/guardians
age 6 and up S = Siblings
P-13+ = Parents/guardians,
teens and up
C =
Caregiver/therapist/group homes/assisted apt/workshop, shelter
Q = Material is very
graphic and may not be appropriate for new parents |
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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 *P, E |
6.00 |
8.50 |
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245.1 |
Best Practices Guidelines
for Standard of Care in PWS (Book) - (2010) Created by
the IPWSO Caregiver Conferences 2008 & 2009. Presentations, Abstracts
and Guidelines for presenting standards of care in over 80 nations.
Over 200 pages, the breakthrough guide is for all caregivers, parents,
teachers & health care providers. Features Guidelines & Models
developed for use across all environments where people are caring for
individuals with PWS. *E,C |
55.00 |
55.00 |
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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 * P-3 |
5.00 |
7.50 |
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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. *P,C |
15.00 |
20.00 |
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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
*P-5 |
5.00 |
7.50 |
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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. *E,P,C |
14.00 |
19.00 |
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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. *E,P,C |
10.00 |
15.00 |
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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
*P,C,E
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6.00 |
8.50 |
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235.1
NEW |
Growth Hormone and Prader-Willi Syndrome Second Edition- A Reference
for Families and Care Providers- Donald G. Goranson, Jr., Editor,
This comprehensive 72-page booklet includes extensive pictures and
graphs in full color- and all the up-to-date information on GHT. |
10.00 |
15.00 |
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128
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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.
*P
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5.00 |
7.50 |
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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
*P |
7.00 |
10.00 |
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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. *M,C |
50.00 |
75.00 |
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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. *P-6+ |
8.00 |
10.00 |
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252
NEW |
Miracle in Potential
(2010) by Joanne Griggs. This compelling story and "Intervention
Lifestyle" resource especially for those families with babies or
children diagnosed as having a disability or developmental delay is
compelling and content rich. Softcover , 267 pages *P, C |
34.00 |
39.00 |
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124
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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. *P-6+ |
10.00 |
12.00 |
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108.1 |
My Grandchild has
Prader-Willi Syndrome: Now What? (2010 update)
Booklet written for grandparents by grandparents Barb McManus & Michele
Leightman; 16 pgs *P |
5.00 |
7.50 |
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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 *P-5 |
16.00 |
18.00 |
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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 *P-3 |
7.00 |
10.00 |
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105
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Nutrition Care for Children with PWS, Ages
3-9 (Revised 2010) by Karen H. Borgie, M.A., R.D., and
Norma Terrazas, R.D., L.D. Covers calorie needs, supplements, diet
planning and food management, and explains food exchange lists.
Softcover, 12 pages. *P-3+ |
3.00 |
5.50 |
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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 *P-9+ |
5.00 |
7.50 |
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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 *P13+ |
10.00 |
15.00 |
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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. *P,E,C,M |
4.00 |
6.50 |
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225.1
NEW |
Therapeutic Interventions
for the Child with Prader-Willi Syndrome by Janice Agarwal PT, CNDT;
This booklet provides general information about children’s physical
therapy intervention. *C,P |
10.00 |
12.00 |
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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 *P |
6.00 |
8.50 |
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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. (also available in Spanish)
*M, P,C |
2.00 |
3.00 |
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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 *P13+ PWS C,E |
10.00 |
15.00 |
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106 |
Prader-Willi Syndrome
Medical Alerts (revised 2009) 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 *P,M,C,E |
3.00 |
3.00 |
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140
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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. *P,C,M |
20.00 |
25.00 |
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251
NEW |
School Portfolio Resource
– As a parent, one of the most effective ways you can advocate for
your child is through the use of a school portfolio which communicates
to teachers and other school professionals the individual needs,
accomplishments, and interests of your child as they move through their
school years. This packet contains helpful tools to use in creating a
personalized school portfolio. *E,P,C |
8.00 |
11.00 |
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230.6
NEW |
Scientific Abstract- October 2011 Conference |
10.00 |
15.00 |
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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 *P, S |
10.00 |
15.00 |
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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
*P 5+ S
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5.00 |
8.00 |
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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 *P, C |
15.00 |
15.00 |
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240
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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.
* P13+ C |
20.00 |
25.00 |
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236
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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. *P,C PWS |
10.00 |
15.00 |
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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 *P, C |
4.00 |
4.00 |
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222 |
Cards
for Legal Situations – For Law Enforcement Personnel
(In case the police become
involved in a behavior or food incident). Pkg. 4 for $2.00 *P, C |
2.00 |
2.00 |
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DVDs, CDs, & Videos |
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203 |
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. *Q,P,C,E,M |
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245 |
Best Practices Guidelines
for Standard of Care in PWS (CD) - (2010) Created by
the IPWSO Caregiver Conferences 2008 & 2009. Presentations, Abstracts
and Guidelines for presenting standards of care in over 80 nations.
Breakthrough guide for caregivers, parents, teachers & health care
providers. Features Guidelines & Models developed for use across all
environments where people are caring for individuals with PWS. *E,C |
55.00 |
55.00 |
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244 |
East Meets West (DVD’s) –
7th International PWS Conference May 20-23, 2010 (General
Program) 5 Discs – 7¾ hours Click here for details.
*P,C, E,M
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40.00 |
50.00 |
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241
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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 *P,C,E,M |
25.00 |
30.00 |
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206
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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 *Q, P,C E, M |
15.00 |
20.00 |
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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. (29 minutes) *Q, C,E ,P13+ |
20.00 |
25.00 |
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214.1 |
Maribel in Placement – (2008) DVD showing brief
excerpts from the original struggle when Maribel was living at home, and
the vast improvements due to an appropriate placement. Helpful for
families with placement needs. Produced by Mercedes Rivera, sister of
Maribel, and Albert Salaz (10 minutes) *Q,C,E, P13+ |
8.00 |
10.00 |
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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 *M,C |
15.00 |
20.00 |
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926 |
Rap CD featuring “I Ain’t
Trippin” from the 2007 National Conference in Dallas, TX and “MY
Name’s Not Willy” from the 2003 National Conference in Orlando, FL * P,C
,PWS |
5.00 |
5.00 |
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246
NEW |
Prader-Willi Syndrome- Residential Staff Training DVD- created by
PWS California Foundation, Produced by Albert Salaz, Jr. Productions-
Provide Residential Service Providers with critical information about
how Prader-Willi Syndrome impacts their residents. (77 minutes) |
20.00 |
30.00 |
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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 *P,E,C |
10.00 |
10.00 |
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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 *E,C,P
* Special Promo: DVD +
Educator’s Handbook (#232) for $28.00 – Order #243 |
20.00 |
20.00 |
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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!
* P,E,C, PWS
Click here to view demo |
15.00 |
20.00 |
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BROCHURES
(Also available as handout on website in “Members Only”)
(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
*P, E, C, M For all |
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112.5 |
Helping with Diet Management - Children with Prader-Willi Syndrome at
School A guide for parents and educators. |
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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, strategies and a brief overview of the
syndrome. |
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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. |
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111 |
Prader-Willi Syndrome
Weight & Behavior Management Suggested Do’s and Don’ts for
controlling the two major problems associated with PWS. |
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109 |
Someone You Know Has PWS
Basic information for relatives, friends, neighbors, and others in
contact with people with PWS. |
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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. |
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107 |
Questions and Answers on
Prader-Willi Syndrome Basic information about PWS for anyone
unfamiliar with the syndrome. |
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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. |
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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)
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241
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Food, Behavior and Beyond –
Practical Management for the Child or Adult with PWS (DVD)
(2005) by Linda M. Gourash MD, developmental Pediatrician and Janice
L. Forster MD, child and adolescent neuropyschiatrist. Suggestions on
nutrition, food and behavior, cognitive and behavioral trails and
medications. *P,C,E,M
SPANISH SUBTITLES; 5 Segments – 2 ½ Hours |
25.00 |
30.00 |
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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) |
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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) |
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107.1 |
(B)
FOLLETO - PREGUNTAS Y RESPUESTAS SOBRE EL SINDROME PRADER-WILLI
(Questions and Answers on
Prader-Willi Syndrome ) |
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