1. Prader-Willi Syndrome Association (USA) praderwilli syndrome Association (USA) is dedicated to serving individuals affected by prader-willi syndrome (PWS), their families, and interested http://www.pwsausa.org/

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2. Yale WSPWS Program Diagnostic assessment, selected treatment services and opportunities to participate in research from the Yale University Child Study Center. http://info.med.yale.edu/chldstdy/wspws

3. The Prader-Willi Syndrome Association (UK) A description of praderwilli syndrome and the Association that supports people and families who deal with it. http://www.pwsa-uk.demon.co.uk/

Click here to go to our new website! The Prader-Willi Syndrome Association (UK) - Web page last updated 8th July 2005

4. Prader-Willi Syndrome Association Of Ohio -- Growing To New Heights A nonprofit organization that fosters awareness, supports affected persons and families and encourages research into the causes, management, and cure of the syndrome. http://www.pwsaohio.org/

Support from Experience State Office 1087 Dover Drive Medina, Ohio 44256 email: pwsaohio@aol.com Education from Professionals Laughter from Love Families Getting Together - September 17 - click Spotlight for info Spotlight 2005 Events About PWSA of OHIO Mission Statement PWSA of OHIO is a chapter of PWSA-USA and is a non-profit, tax-exempt organization dedicated to providing understanding and awareness of Prader-Willi syndrome, to supporting affected persons and families, to improving the quality of their lives, and to encouraging research into the causes, management, and cure of Prader-Willi syndrome. Organization Structure The organization is maintained by volunteers, mainly being parents of PWS children and adults dedicated to enriching the lives of their children. Officers include President, Vice-President, Secretary and Treasurer. The Board of Directors shall consist of seven members and four officers elected by and from the membership at large. The term of Officers shall be two years. The term of directors shall be 3 years. Elections are generally held on October and the new Board of Directors then begins their office on the first of January the following year. PWSA of OHIO is a member in good standing and a chapter under the National organization of PWSA-USA. Our organization is also a member of the Ohio Association for Non-Profits and an Affiliate member of the ARC of OHIO. Meetings Newsletter The PWSA of OHIO Newsletter "The Voice" printed its premier issue December, 1993. Many presidents have come and gone since this first issue, but the goal of the newsletter has remained the same - getting information and support to families. We now have many avenues to reach those in need. In 1999, brochures were developed from PWSA of OHIO and each year more are added to the state's library. In 2000, our website was established, giving us another way to distribute information. "The Voice" is printed 3-4 times a year and is a benefit of membership.

5. PWSA Of Victoria (Australia) Home Page Includes details about the organization, a diagnosis/infant guide, a general guide, members stories and links. http://www.pws.asn.au

Updated August 2004* The PWSA of Victoria Web Site is intended to provide information only - not to diagnose or advocate particular treatment options. The Diagnosis and treatment of Prader-Willi Syndrome should be made through a qualified medical professional. Thus, it is strongly urged that patients do not change treatment without first consulting their doctor. The inclusion of any resource or link in the PWSA of Victoria Web Site does not imply endorsement. Site design: Helen Anderson On this Prader-Willi Syndrome Association of Victoria (Australia) website you will find: Details on our Association, what we offer and how we can be contacted Information for those who have had a recent diagnosis of PWS for your infant or toddler General information about PWS across all age groups A list of books, publications, and tapes available in our Members Library Stories and pictures from some of our members Contacts for other Australian PWS Associations Links to PWS Associations around the world and other useful organisations A link to our community at MC2 (at the top of the page) where you can look at, or post messages to, a forum where parents and others discuss PWS issues. You can also "chat" to others in your situation and find out about events

6. Prader-Willi Syndrome Association Of South Carolina Provides information and networking between parents and professionals to help meet the needs of people affected by praderwilli syndrome. http://www.midnet.sc.edu/prader-willi/

Prader-Willi Syndrome Association of South Carolina W. Rhett Eleazer, President 1817 Pickens Street Columbia, S.C. 29201 Email: Prader-Willi Association of S.C. Mission Our mission is to provide information and networking between parents and professionals to help meet the needs of people affected by Prader-Willi Syndrome and their families, care givers, teachers, doctors, etc. Goal Our goal is to establish an ongoing list of professionals, doctors, genetic clinics as well as a list of parents who wish to be in touch with other parents, and support the Prader-Willi Syndrome Association of South Carolina and the National Prader-Willi Association. About Prader-Willi Syndrome PWS is a birth defect. There are no known causes for this genetic accident that causes this lifelong condition that affects about one in 15,000. Both sexes and all races are affected. There is no cure yet, only treatment. PWS Characteristics include short stature, mental retardation or learning disabilities, incomplete sexual development, low muscle tone and a constant urge to eat. Individuals affected to not metabolize calories normally and that leads to obesity in most cases. Individuals are very much alike in their physical appearance and behaviors that include poor gross motor skills, speech and language difficulties, cognitive limitations, mood swing, behavior problems, high pain threshold, skin picking, and dental problems. Contributions The Prader-Willi Syndrome Association (USA) provides a vehicle of communication for parents, professionals, and other interested citizens. Supported solely by memberships and donations. The Prader-Willi Syndrome Association (USA) has made a diverence in the lives of many affected by this unique syndrome. You, too, can help.

7. Prader-Willi Alliance Of New York Represents the interests of individuals in New York State with praderwilli syndrome, their families, and the professionals who provide services to the Prader-Willi population. http://www.prader-willi.org

Home Newsletter Conference 2006 Membership N.Y. State DDSOs ... Links State Chapter Welcome to the Internet home of the Prader-Willi Alliance of New York, Inc. The Prader-Willi Alliance of New York, Inc., a chapter of the Prader-Willi Syndrome Association (USA), represents the interests of individuals in New York State with Prader-Willi syndrome, their families, and the professionals who provide services to the Prader-Willi population. Through conferences, publications, electronic communication and networking (parent-to-parent, parent-to-professional, professional-to-professional), the Prader-Willi Alliance provides a valuable resource for individuals and families sharing the same concerns. Please become a member of the Alliance, attend our conferences, and add your voice to the others speaking on behalf of Prader-Willi syndrome in New York State. SAVE THIS DATE! The 16th Annual Conference of Prader-Willi Alliance of New York, Inc. and The 28th Annual National Prader-Willi Syndrome Association (USA) Conference Date : July 19-21, 2006

8. Prader-Willi Syndrome Association Of South Africa Informative regarding PWS, its symptoms, causes, prevention and treatment. http://www.praderwilli.org.za

Welcome to the website of the Prader-Willi Syndrome Association of South Africa PWSA (SA) (Nonprofit Organisation number 035-837-NPO) ... click to enter visitors updated August 2005 The Prader-Willi Syndrome Association of South Africa is a member of the International Prader-Willi Syndrome Organisation (IPWSO)

9. Prader-Willi Syndrome Association (USA) praderwilli syndrome Association (USA) http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. Syndrome/Medical About praderwilli syndrome. History of prader-willi syndrome The Genetics of prader-willi syndrome An Explanation for the Rest of Us http://www.pwsausa.org/syndrome/

Phone: 800-926-4797 or 941-312-0400 What is Prader-Willi syndrome? A disorder of chromosome 15 Prevalence: 1:12,000- 15,000 (both sexes, all races) Major characteristics: hypotonia, hypogonadism, hyperphagia, cognitive impairment, difficult behaviors Major medical concern: morbid obesity About Prader-Willi syndrome History of Prader-Willi Syndrome The Genetics of Prader-Willi Syndrome: An Explanation for the Rest of Us ... Glossary of terms associated with PWS Medical Concerns Anesthesia and PWS Respiratory Problems in Prader-Willi Syndrome Recommendations for Evaluation of Breathing Abnormalities Associated with Sleep in Prader Willi Syndrome Consensus statement from PWSA (USA)'s Clinical Advisory Board - 12/03 In light of the report of PWS deaths associated with choking, we think it is important for parents and providers to have knowledge on the Heimlich procedures. The most effective way to learn these methods is to take a CPR course that includes practice of the Heimlich procedures, thus we encourage all to take such a course with frequent reviews. Please remember, it is important to dislodge the food prior to doing CPR Instructions for saving a choking victim using the Heimlich Maneuver Medical Alert : I mportant for Medical Treatment ... Common Questions about GH and PW If your child/adult with PWS or the person you are serving with PWS is having serious behavior problems, psychological or psychiatric issues

11. QUESTIONS AND ANSWERS ON PRADER-WILLI SYNDROME QUESTIONS AND ANSWERS ON praderwilli syndrome http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. MedlinePlus: Prader-Willi Syndrome Specific Conditions; Speech and Language and praderwilli syndrome (Prader-Willi Information from the Medical Encyclopedia; prader-willi syndrome http://www.nlm.nih.gov/medlineplus/praderwillisyndrome.html

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Other health topics: A B C D ... List of All Topics Prader-Willi Syndrome Contents of this page: From the NIH Overviews Coping Genetics ... Information from the Medical Encyclopedia Search MEDLINE/PubMed for recent research articles on Prader-Willi Syndrome You may also be interested in these MedlinePlus related pages: Genetics/Birth Defects Mental Health and Behavior From the National Institutes of Health Genes and Disease: Prader-Willi Syndrome (National Center for Biotechnology Information) Overviews Questions and Answers on Prader-Willi Syndrome (Prader-Willi Syndrome Association) Also available in: Spanish Coping My Child Has Prader-Willi Syndrome, Now What? (Prader-Willi Syndrome Association) Someone You Know Has Prader-Willi Syndrome (Prader-Willi Syndrome Association) Disease Management (Prader-Willi Syndrome Association) Also available in: Spanish Specific Conditions Speech and Language and Prader-Willi Syndrome (Prader-Willi Syndrome Association) Related Issues Patient's Guide to Low Testosterone (Endocrine Society, Hormone Foundation)

13. The Children's Institute Pediatric rehabilitation facility in Pittsburgh, Pennsylvania offering programs for special education, learning disabilities, praderwilli syndrome, and special needs adoption. Offers both inpatient and outpatient services. http://www.amazingkids.org

Contact Us Home Site Map About Us ... Events Calendar Pediatric Rehabilition Grand Rounds- July, August, September Pediatric Rehabilitation Grand Rounds- October, November December FEAST Informational Sessions-September, October, November Project STAR's Rising Star Celebration-9-23-2005 Contact Emily Lamison at 412-244-3057 In the News Subtle Signs-Diabetes in Children By Marilyn Kukula FOR THE TRIBUNE-REVIEW Monday, August 1, 2005 Non-Discrimination Policy

14. Prader Willi Syndrome Q A praderwilli syndrome by prader-willi syndrome Association (USA) What is prader-willi syndrome (PWS)? http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. MedlinePlus Medical Encyclopedia: Prader-Willi Syndrome praderwilli syndrome is a congenital (present from birth) disease characterized by obesity, decreased muscle tone, decreased mental capacity, http://www.nlm.nih.gov/medlineplus/ency/article/001605.htm

@import url(/medlineplus/images/advanced.css); Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Prader-Willi syndrome Contents of this page: Illustrations Definition Causes, incidence, and risk factors Symptoms ... Calling your health care provider Illustrations Hypotonia Definition Return to top Prader-Willi syndrome is a congenital (present from birth) disease characterized by obesity decreased muscle tone , decreased mental capacity, and hypogonadism Causes, incidence, and risk factors Return to top Prader-Willi is caused by the deletion of a gene on chromosome 15. The majority of patients have a deletion of the father's DNA in this region. The remaining patients frequently have two copies of the mother's chromosome 15. The maternal copy of this gene is turned off in all people. When there is a deletion of the father's DNA (approximately 70% of patients), the disease occurs. This is because the patient is left with only the inactive, maternal copy. Signs of Prader-Willi may be seen at birth. New infants with the condition are often small and very floppy (hypotonic). Male infants may have undescended testicles. The growing child exhibits slow mental and delayed motor development, increasing obesity, and characteristically small hands and feet. Rapid weight gain may occur during the first few years because the patient develops uncontrollable hunger which leads to morbid obesity.

16. Wonderland Camp For The Physically And Mentally Disabled Missouri camp provides summer programs for adults and children with physical or mental challenges including MS, multiple dystrophy, cerebral palsy, downs syndrome, praderwilli syndrome. http://www.wonderlandcamp.org/

Welcome to Wonderland Camp A Special Camp for Special Friends On the Lake of the Ozarks W onderland Camp is dedicated to serving mentally and physically challenged individuals of all ages for over 30 years. Great News The Missouri Jaycees Mid Missouri Mavericks Night at the Ball Park! It will be on Saturday, August 20 2005 7:05 pm (this game will be on TV) at the University Campus Taylor Stadium. Tickets reserved seating $6.00 Wonderland Camp will receive 1/2 of every ticket sold!! B-B-Q Pork Steak Dinner (serving from 5 pm - 8 pm), $7.50 per plate. Deadline for ticket sells will by Friday, July 15, 2005. For tickets please contact Jackie Bax at 573-897-9937, bax60590@midamerica.net Don't forget you can always call Wonderland Camp at 573-392-1000. Hope to see you there!! One more thing, heres a link to the latest Newsletter You will need the Adobe Reader to view this pdf file. If you have problems viewing this file email me About Us Wonderland Camp is the dream of Charles J. Miller. He worked with the Missouri Jaycees to build a residential summer camp for the mentally and physically challenged children and adults. Today Wonderland is a place where they can enjoy the exhilaration of outdoor living and play together for one magical week.

17. GeneReviews Prader-Willi Syndrome Your browser does not support HTML frames so you must view praderwilli syndrome in a slightly less readable form. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. Ipwso.org International Prader-Willi Syndrome Organization International praderwilli syndrome Organisation. President's Corner July 2005. IPWSO Song "Ich Auch" (Me Too) Newletter Summer 2005 http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

19. A Description Of PWS praderwilli syndrome Association (UK) In December 1996, the Prader-Willi News (the quarterly magazine of the PWSA(UK)) included an insert, Siblings, http://www.pwsa-uk.demon.co.uk/describe.htm

What's your interest? Who we are/ What we do What's new/ Events What is PWS ... More about PWS Description of Prader-Willi Syndrome Early Years Primary School Years Teenage Years Adults with PWS ... Living with PWS Pregnancy and After Every pregnancy is individual, but the foetal movements of a baby with PWS are often much weaker than those of a "normal" baby (not, of course, easy to recognise in the case of a first pregnancy). About a quarter are carried and delivered in the breech position and, while likely to be full term, are frequently of low birth weight. The new born baby with PWS is usually small, weak and floppy, with a feeble cry and poor or no suck. Reflexes usually present at birth may not appear until later. Physical features may include narrow face, almond shaped eyes, small mouth, feet and hands, fair skin and hair and small genitalia (more apparent in male babies). A new born with PWS in an incubator. It is not unusual for these babies to begin life in an Special Baby Care Unit and because of the poor muscle tone (floppiness), and accompanying poor suck, there are usually feeding problems for the first few weeks or months of life. Tube feeding is common and successful breast feeding unlikely. These problems eventually resolve themselves to the extent that the infants can feed, although their suck will remain relatively weak and feeding times may be prolongued. To begin with, the baby may be so weak that it will need to be woken for feeds. Gradually, during the first year of life, the degree of floppiness reduces and motor functions begin to improve, although they are likely to remain delayed or weak. Most, if not all, infants with PWS will sit, stand and walk late. The weak muscle tone, which caused problems with feeding, is likely to cause later problems with speech and early consultation with a speech therapist is recommended.

20. Prader-Willi Alliance Of New York Represents the interests of individuals in New York State with praderwilli syndrome, their families, and the professionals who provide services to http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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