Parents' Perspective We are so glad that you have found this wonderful website designed by the Junior League Family Resource Center. It is full of valuable information that will educate and equip you about Prader-Willi Syndrome. The main thing we have learned, as the parents of a child with PWS, is that it is not a “one-size-fits all” syndrome. Though there are similar characteristics, each child is created with a unique personality and temperament that is altered because of this genetic syndrome. Likewise, each family has a unique “personality” and way of responding to and coping with this unexpected turn of events in their lives We grieved the child we thought we were having and asked ourselves “Why, why did this happen to us?”, like most people do during a traumatic event. We were even in denial that it was a genetic syndrome for awhile. After some time passed, we stopped doing that (although the “Why” creeps back into our thoughts occasionally) and began to ask ourselves “What”. "What can we learn about PWS, and how can we share that information with family, friends, health professionals, educators, church family,and the general population?” Our lives have a different course than most, and we adjust often, but that is something we don’t apologize for. We use it as an opportunity to be flexible and educate. We hope that this website on PWS will equip you to plot your own course in this life and live it the best that you can with what you’ve been given, which is the most any of us can do. Sincerely, Mark and Becky Evers

What is Prader-Willi Syndrome? Prader-Willi syndrome (PWS) is a genetic disorder caused by a loss of several genes contributed by the father on chromosome 15 that occurs in about 1 in 15,000 births. PWS occurs from three main genetic errors: about 70% of cases have a non-inherited deletion in the paternally contributed 15th chromosome; about 25% of cases have maternal uniparental disomy (UPD)-two maternal 15 chromosomes and no paternal chromosome 15; and about 2-5% have an imprinting error in the “imprinting” process that renders the paternal contribution nonfunctional. Genetic testing is needed to determine PWS diagnosis and subtype characterization. All families should receive genetic counseling, although recurrence is very rare except in those 2-5% of cases of imprinting mutations, translocations or inversions. Some of the characteristics at birth include hypotonia (floppiness) and failure to thrive. As infants, delays in motor, cognitive skills and speech may become apparent. In early childhood, an appetite disorder caused by hypothalamic dysfunction (a part of the brain that controls appetite, sleep patterns and temperature control) emerges. Compulsive eating and obsession with food usually begins before age 6. The drive to eat is physiological and overwhelming and is difficult to control. Because of the low muscle tone and inactivity, there is a decreased need for calories. Strict diet adherence, regular exercise and limiting access to food are usually all needed to maintain a desirable weight and lifelong health. Behavior issues such as compulsions, rigidity to schedules and routines and temper tantrums may be more difficult to manage for parents and caregivers. Daily routines, schedules and structures and also medications in some cases may help manage behavior problems. Those with Prader-Willi syndrome also have several strengths that should be recognized, as well. There have been some published studies about jigsaw puzzle and word search skills. Many also have a nurturing and loving streak towards animals and babies and are usually very attentive to their needs. Some can be show great perseverance in finishing tasks that can seem monotonous or routine to others. Many of these strengths can be maximized in vocational settings with job coaching and close supervision are in place to manage food access and behavior. While there is currently no cure for Prader-Willi syndrome, several treatments appear promising: early diagnosis and intervention, growth hormone treatment, limiting all access to food, and daily exercise. With these interventions in place, outcomes can be optimized in persons with PWS and their families struggling with Prader-Willi syndrome. Elisabeth M. Dykens, Ph.D. Deputy Director, Kennedy Center Institute Vanderbilt University Elizabeth Roof, Coordinator,Kennedy Center Institute Vanderbilt University

Behavior Management For Persons With Prader-Willi Syndrome: A Collection of Articles Sarasota, FL: PWSA(USA), 1998. Pages: 49 Library of Congress Number: RJ520.P7 B44 1998 Category: Specific Chronic Health Condition   Information covered: general articles on behavior concerns, use of medications in managing behaviors, skin-picking, toilet training and teaching, and social skills teaching.

Diet and Nutrition For Persons With Prader-Willi Syndrome: A Collection of Articles By Prader-Willi Syndrome Association (USA) Sarasota, FL: PWSA(USA), 1998. Library of Congress Number: RJ520.P7D54 1998 Category: Nutrition/Weight Management   Information covered: recipes and anecdotal advice from parents on nutrition and diet.

Early Years: A Collection of Articles Regarding Young Children With Prader-Willi, The By Prader-Willi Syndrome Association Sarasota, FL: PWSA(USA), 1998. Library of Congress Number: RJ520.P7 E12 1998 Category: Specific Chronic Health Condition   This book contains a collection of articles and essays written by parents and caregivers of children with Prader-Willi Syndrome.

Growing Up With Prader-Willi Syndrome: The Personal Reflections of a Mother By Janalee Tomaseski-Heinemann Sarasota, FL: PWSA(USA), 1998. Library of Congress Number: RJ520.P7 T66 1998 Category: Specific Chronic Health Condition   The mother talks about topics ranging from disabilities and marriage to neglected siblings and from dealing with tantrums to other behavior problems.

Growing Up With Prader-Willi yndrome: The Personal Reflections of a Mother Sarasota, FL: Prader-Willi Syndrome Associatioin (UAS), 1999. Pages: 38

Growth Hormone: Articles of interest from 1993, 1995, and 1996 including the Policy Statement of the PWSA (USA) Scientific Advisory Board By Prader-Willi Syndrome Association Sarasota, FL: PWSA(USA), 1999. Library of Congress Number: RJ520.P7G 1999 Category: Specific Chronic Health Condition   This book contains a collection of essays by families, caretakers, and medical professionals about growth hormones and children with Prader-Willi Syndrome.

Low-fat, Low-sugar Recipes for the Prader-Willi Syndrome Diet (and anyone else who needs to watch calories) By Donna Unterberger Sarasota, Florida: PWSA (USA), 2003. Library of Congress Number: RJ520.P7U58 2003 Category: Nutrition/Weight Management   A comprehensive cookbook with unique and creative low fat-low sugar and low calorie recipes. It eases the way for families dealing with Prader-Willi syndrome and can be a daily aid to all combating obesity.

Planning for Their Future: General Estate and Guardianship Planning for Families of Persons with Prader-Willi Syndrome By William L.E. Dussault, et al Sarasota, FL: Prader-Willi Syndrome Association (USA), 1998. Pages: 28 Library of Congress Number: RJ520.P7 P63 1998 Category: Ethical, Legislative, and Legal Issues   Information covered: wills, basic estate plans, spendthrift provisions, selecting a trustee, non-profit foundations, other options, letter of intent, guardianship and alternatives to guardianship, and more. A glossary of terms is included as well as suggestions for additional resources.

Prader-Willi Syndrome Is What I have Not Who I Am! By Janalee Heinemann Sarasota, FLorida: Coastal Printing, Inc., 2004. Library of Congress Number: RJ520.P7P73 2004 Category: Specific Chronic Health Condition   This is a book of "Feelings" contributed by children and young adults with PWS which were collected by a mother and this author who has a Prader-Willi Syndrome child.

Prader-Willi Syndrome Medical Alerts Sarasota, FL: PWSA(USA) Handy purse-size booklet with necessary information on the most common medical issues related to the syndrome.

Pupils Wanting Success: Resources for Those Who Support Students with Prader-Willi Syndrome By Barabara Dorn, Barabara J. Goff Sarasota, FL: PWSA(USA), 2004. This information for educators includes a Teacher's Handbook and worksheet about issues and interventions for school staff. Preschool through highschool and job transition.

Student with Prader-Willi Syndrome Information for Educators, The By Barbara Dorn, Barbara Goff Sarasota, FL: Prader-Willi Syndrome Association, 2003. Library of Congress Number: RJ520.P7D67 2003 Category: Specific Chronic Health Condition   Sub-Category: Educational and Community Issues   The purpose of this resource manual is to assist you in gaining a better understanding of PWS as well as some ideas and strategies to help you create a successful learning experience for your student. Many of the ideas presented have come from educators, creative teachers, therapists and other school personnel. Parents have also been instrumental in providing new and successful approaches that have helped their son/daughter as they learn.

Teaching the Tiger: A Handbook for Individuals Involved in the Education of Students with Attention Deficit Disorders, Tourette's Syndrome, or Obsessive-Compulsive Disorder By Marilyn P. Dornbush, Sheryl K. Pruitt Duarte, CA: Hope Press, 1995. Library of Congress Number: LC4713.4.D67 1995 Category: Educational and Community Issues   This comprehensive manual provides parents and educators with strategies, advice, and information on students with ADD, Tourette Syndrome, and OCD. Topics include definitions and scientific information on these conditions, treatments, psychological impact, academic interventions, classroom modifications, pitfalls such as homework, testing, studying, social skills, the use of computers and other commonly used programs in schools, evaluation assessments, and IEPs. Additionally, the book gives information on modifying college admission tests and the federal laws pertaining to handicapped students. Educational strategies and work samples, suggestions for computer software and further reading, legal documents, and lists of organizations are included as well.

Prader-Willi Syndrome: The Early Years By Merlin, MD, PhD Butler, Suzanne, MD Cassidy, Janalee, MSW Heinemann, Phillip, MD Lee, Ken, BS Smith Sarasota, FL: PWSA(USA), 2001. Length: 42 minutes Library of Congress Number: RJ520.P7P73 2001 Category: Specific Chronic Health Condition   This video about the early years of Prader-Willi Syndrome is to inform parents about the many aspects of PWS and the many issues involved. PWS is defined and explained in terms of physical and mental characteristics. There is emphasis placed on early diagnosis, development, obesity, genetics, a positive outlook, and family issues. Treatment options are discussed as well as the importance of a specialized medical staff that is familiar with the special medical concerns of PWS. The video also informs the viewers about the resources available to those affected by PWS from the Prader-Willi Sydrome Association.

Searching for Solutions By Prader-Willi Syndrome Association (USA) Graft, Inc., 1997. Length: 16 minutes Library of Congress Number: RJ520.P7 S43 1997 Category: Coping   This video focuses on people with Prader-Willi Syndrome in later stages of life. It features people with PWS and their parents and they offer advice to others affected by PWS. Emphasis is placed on what people with PWS can achieve and that people with PWS can be very successful.

Waves, Inc. 1320 W. Main St. Suite 110 Franklin, TN 37064 Phone: 615-794-7955 Fax: 615-794-6019 The Waves program is open to children ages 0 to 3 experiencing delays in development. Program also open to ages 18-21 with learning or physical disabilities, assisting with the transition from school to work. Program also offers help to adults ages 22-89 with mental retardation.

All Ages

Michael and Marie Children with Prader-Willi Syndrome By Valerie Rush Sexton, Debbie Erbe Fortin Sarasota, FL: Coastal Printing, 2003. Library of Congress Number: RJ520.P7S49 2004 Category: Specific Chronic Health Condition   Prader-Willi Syndrome, a rare genetic syndrome, is life-long, affects all races and both sexes. This book deals with the problems that these children and their parents face and how to deal with them. The problems are: food and weight issues, motor skills, cognition and behavioral issues. The Lesson Plan was developed by Jeri Brebrin, parent of a child with PWS.

Children

Hi I'm Adam: A Child's Book About Tourette Syndrome By Adam Buehrens Duarte, CA: Hope Press, 1991. Library of Congress Number: RJ496.G55B84 1990 Category: Specific Chronic Health Condition

6-13 years

Children with Tourette Syndrome By Tracy Haerle Rockville, MD: Woodbine House, 1992. Category: Specific Chronic Health Condition

6-14 years

Taking Tourette Syndrome To School By Tira Krueger JayJo Books, 2001. Library of Congress Number: RC375.K78 2001 Category: Specific Chronic Health Condition   The author's goal was to write a book to help other children understand, and no longer fear or ridicule, a child's special challenges. A Tourette Syndrome Kids' Quiz is contained in this book.

7-13 years

Living with Tourette Syndrome By Elaine Fantle Shimberg New York, NY: Fireside, 1995. Category: Specific Chronic Health Condition

9-12 years

Views From Our Shoes: Growing Up With a Brother or Sister With Special Needs By Donald Meyer Bethesda, MD: Woodbine House, 1997. Library of Congress Number: HV894.V54 1997; C:2 Category: Coping   This book contains 45 essays written by children who have special needs siblings. These are heartfelt personal stories from people age 5 to age 18, sharing how their siblings' disabilities have affected their lives and the lives of those around them. The book has a list of web-sites and a glossary for anyone unfamiliar with the conditions in the stories.

Teens

Prader-Willi Syndrome Is What I have Not Who I Am! By Janalee Heinemann Sarasota, FLorida: Coastal Printing, Inc., 2004. Library of Congress Number: RJ520.P7P73 2004 Category: Specific Chronic Health Condition   This is a book of "Feelings" contributed by children and young adults with PWS which were collected by a mother and this author who has a Prader-Willi Syndrome child.

All Ages

My Name's Not Willy!: For all those with Prader-Willi Syndrome Sarasota, FL: Prader-Willi Sydrome Association (USA) Category: Specific Chronic Health Condition   Sub-Category: Recreation, Travel, Play   Emphasizes that Prader-Willi is what you have, not what you are. Rap music CD written by a teen with PW Syndrome. The message is positive and the lyrics are included.

6-up

Camp Sky Ranch 634 Sky Ranch Road Blowing Rock, NC 28605-9738 Phone: (828) 264-8600 Fax: (828) 265-2339 E-mail: jsharp1@triad.rr.com Website: http://www.campskyranch.com Camp Sky Ranch is a private residential camp for children and adults with disabilities including Down Syndrome, Prader-Willie Syndrome, ADD/HD, Fragile X Syndrome and Autism. It provides an opportunity for group living with other campers of the same age. This experience is invaluable to the development of each individual. The camp is located on 145 acres of forested land in the Blue Ridge Mountains of North Carolina. It has been privately owned and operated since 1948 and is one of the oldest residential camps specifically designed for children with disabilities. Activities include: Swimming, camp craft, kickball, softball, archery, fishing, horseback riding, nature lore, volleyball, boating, hiking, overnight camping, horseshoes, arts and crafts, cookouts, out of camp trips, and evening programs. Campers may stay 2, 4, or 6 weeks. Tuition is $1200 per camper per two-week session. $200 deposit per session must accompany application. (Application may be downloaded from their web site.) Promotional video available. 2009 Dates Session 1: June 21- July 4 Session 2: July 5 - July 18 Session 3: July 19 - August 1

6-21 years

Camp Will / Therapeutic Summer Day Camp 1120 Hillsboro Rd. Franklin, TN 37064 Phone: 615-790-5719 ext 21 Fax: 615-790-4732 Website: http://www.fssd.org/index.php?option=com_content&task=view&id=116&Itemid=216 Camp Will, located at Walnut Grove Elementary School, 326 Stable Drive in Franklin, TN, provides activities that include swimming, art, music, dance, and recreation therapy groups, as well as community outings. Please contact Vicky Pitner at 615-790-5719 ext. 21 for additional questions, exact camp dates and application.

6-21 years

Keystone Pocono Camp RR 1, Box 1515 Gouldsboro, PA 18424 Phone: 570.842.4521 E-mail: glance@keycommresp.com, campkey4U@aol.com Keystone Camp will be operating its specialized 9-week camp, from June to August, focusing especially on campers with Prader-Willi Syndrome. This session offers an excellent opportunity for campers with PWS to form friendships and participate in fun-filled, excitiing adventures. In addition, Keystone Camp offers the traditional camp experience to individuals with developmental disabilities such as mental retardation, cerebral palsy, epilepsy, autism and neurological impairments. Campers have the option of overnight stay at the camp or to participate in the day camp. The camp is located on 70 acres in the Pocono Mountains of Pennsylvania.

8-up

Recreation Unlimited Prader-Willi Camp PWSA of Ohio, 7700 Piper Rd Ashley, OH 43003 Phone: 740.548.7006 Fax: Fax: (740) 747-2640 or (740) 747-3139 E-mail: info@recreationunlimited.org Website: http://www.recreationunlimited.org/ Camps & Programs The mission of Recreation Unlimited is to provide year round programs in sports, recreation and education for individuals with disabilities while building self-confidence, self-esteem and promoting positive human relations, attitudes and behaviors. Recreation Unlimited's philosophy, programs, campus and support team strive to promote the well-being of individuals with disabilities in every aspect. Individuals with disabilities have a full array of camp choices when searching for fun, challenging, accessible activities. Recreation Unlimited is a non-smoking facility.

All information on this website is for educational purposes only. Specific medical advice, diagnoses, and treatments can only be given by your personal health care professionals