1. Prader-Willi Syndrome Association (USA) Text Version, http://www.pwsausa.org/

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2. Prader-Willi Alliance Of New York a chapter of the praderwilli syndrome Association (USA), represents the interests of individuals in New York State with prader-willi syndrome, their families, and the professionals http://www.prader-willi.org/

Home Newsletter Conference 2005 Membership N.Y. State DDSOs ... Links 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.

3. Prader Willi Syndrome Q&A praderwilli syndrome. by prader-willi syndrome Association (USA) What is prader-willi syndrome (PWS)? http://www.thearc.org/faqs/pwsynd.html

Prader-Willi Syndrome by Prader-Willi Syndrome Association (USA What is Prader-Willi syndrome (PWS)? PWS is a complex genetic disorder that includes short stature, mental retardation or learning disabilities, incomplete sexual development, characteristic behavior problems, low muscle tone, and an involuntary urge to eat constantly, which, coupled with a reduced need for calories, leads to obesity. Does PWS run in families? Although PWS is associated with an abnormality of chromosome 15, it is generally considered not to be an inherited condition, but rather a spontaneous genetic birth defect that occurs at or near the time of conception. PWS is found in people of both sexes and all races. How common is this problem? About 1 in 14,000 people in the U.S. are estimated to have PWS, and the birth rate may be even higher. Prader-Willi syndrome is one of the 10 most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified. Does the eating problem associated with PWS begin at birth? No, newborns with PWS are typically described as "floppy" and are unable to suck well enough to get sufficient nutrients due to the low muscle tone (hypotonia). Often they must be fed through a tube for several months after birth, until muscle control improves. Sometime in the following years, usually by preschool age, children with PWS develop an increased interest in food and quickly gain excessive weight if calories are not restricted.

4. 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

5. Prader-Willi Syndrome Websites. praderwilli syndrome Association (USA) prader-willi syndrome. prader-willi syndrome (PWS) is an uncommon inherited disorder characterized by mental retardation http://www.ncbi.nlm.nih.gov/disease/prader.html

This Genes and Disease page has been moved to: Please update your bookmarks. If you are not automatically transported to the new page after 15 seconds, click on this link Genome View SNRPN on chromosome 15 Databases PubMed the literature LocusLink collection of gene-related information OMIM catalog of human genes and disorders Information Prader-Willi Syndrome Association (USA) information, education, and support services GeneClinics a medical genetics resource PRADER-WILLI SYNDROME (PWS) is an uncommon inherited disorder characterized by mental retardation, decreased muscle tone, short stature, emotional lability and an insatiable appetite which can lead to life-threatening obesity. The syndrome was first described in 1956 by Drs. Prader, Labhart, and Willi. PWS is caused by the absence of segment 11-13 on the long arm of the paternally derived chromosome 15. In 70-80% of PWS cases, the region is missing due to a deletion. Certain genes in this region are normally suppressed on the maternal chromosome, so, for normal development to occur, they must be expressed on the paternal chromosome. When these paternally derived genes are absent or disrupted, the PWS phenotype results. When this same segment is missing from the maternally derived chromosome 15, a completely different disease, Angelman syndrome , arises. This pattern of inheritance - when expression of a gene depends on whether it is inherited from the mother or the father - is called genomic imprinting. The mechanism of imprinting is uncertain, but, it may involve DNA methylation.

6. The Prader-Willi Syndrome Association (UK) information provided), please contact Jackie Waters. The praderwilli syndrome Association (UK) - Web page last updated 5th August 2003. http://www.pwsa-uk.demon.co.uk/

What's your interest? Who we are/ What we do What's new/ Events What is PWS ... More about PWS PWSA (UK) 125a London Road Derby DE1 2QQ England Tel: 01332 365 676 Fax: 01332 360 401 Prader-Willi Syndrome (PWS) is a chromosomal disorder, which can affect people of both sexes and of any race or country. Three Swiss doctors -Prader, Labhart and Willi - first described it in 1956. Some time between the age of one and four, children with PWS develop an increased interest in food, which may become an insatiable obsession. Unless their diet is carefully controlled weight gain can be very rapid, leading to obesity, disease and even an early death. The syndrome has many other characteristics, which result in a complex mixture of strengths and weaknesses. Not everyone with the syndrome is the same, some appearing less severely affected in some areas than others. The PWSA (UK) is the only organisation in the UK and the Republic of Ireland to address the unique needs of people with PWS, their parents, carers, enablers, and professionals from health, education and social services who work with them. The PWSA (UK)would like to thank Custom Powders Ltd of Crewe for their kind donation towards the setting up of this web site.

7. 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

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 Prader-Willi Syndrome Association of Victoria Inc ABN 93 836 682 679 We wish to thank for their wonderful support of this site. Privacy: We have no means of identifying you whilst visiting this site. It will be your decision whether to contact us or not.

8. Prader-Willi Syndrome Arizona Association praderwilli syndrome Arizona Association, with photos, personal stories, parenting advice, pictures, and information about PWS. What is prader-willi syndrome? Articles Issues. Prader-Willi Nilli News http://www.azstarnet.com/nonprofit/pwsaa

Prader-Willi Syndrome Arizona Association Click on the sun and the rays to explore this enlightening site! Click here to join today! PWSAA is a chapter affiliated with PWSA(USA) , the national PWS organization. Join us in the Dining Room - the best room in the house! About PWSAA What is Prader-Willi Syndrome? Prader-Willi Nilli News Awareness Day ... What Is the Deadly Hunger? For information, contact ppenta5@aol.com Last update: March 20, 2003

9. 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 Central Office 1061 Novak Road Grafton, Ohio 44044 email: pwsaohio@aol.com Education from Professionals Laughter from Love Check out all the exciting events for 2004!!! Spotlight clinic info 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 OH is a member in good standing and a chapter under the National organization of PWSA-USA. Contacts Vickie Fetsko Phone: (440) 926-1357 email: fetskosv@eriecoast.com

10. 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.

11. Prader-Willi Syndrome / Family Village Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search Google for "praderwilli syndrome" Who to Contact. The prader-willi syndrome Association (USA) 5700 Midnight Pass Rd. Sarasota, Fla 34242 http://www.familyvillage.wisc.edu/lib_pws.htm

Prader-Willi Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Prader-Willi Syndrome" Who to Contact The Prader-Willi Syndrome Association (USA) 5700 Midnight Pass Rd. Sarasota, Fla 34242 Toll-Free: (800) 926-4797 Tel: (941) 312-0400 Fax: (941) 312-0142 E-mail: Reception@pwsausa.org Web: http://www.pwsausa.org/ Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi Syndrome (PWS), their families, and interested professionals. To provide information, education, and support services to its members, PWSA offers: a toll-free telephone number for information and referrals a bimonthly newsletter, The Gathered View publications and audiovisual presentations about PWS (See Publications Available From P.W.S.A.) an annual national conference for families and professionals (See Annual PWSA(USA) National Conference) a nationwide network of local chapters, parents, and professionals See PWSA (USA) Chapters and Affiliated Organizations research funding to expand knowledge and treatment options Representation on the international level Organized in 1975 to provide a resource for education and information about Prader-Willi syndrome and support for families, professionals and other interested citizens, PWSA(USA) was first headquartered in the Minneapolis/St. Paul area, then in St. Louis, Missouri, and currently in Sarasota, Florida since October of 1997. The association is governed by a 12 member Board of Directors who, together with an executive director and four officers, are responsible for directing the organization's operations and serving the 27 state and regional chapters and their members. In addition, 11 health service professionals serve on a Scientific Advisory Board to review research proposals.

12. Prader-Willi Syndrome Prader Willi Syndrome page links to national international support groups, clinics with genetic counselors and geneticists praderwilli syndrome. prader-willi syndrome Association (USA) 5700 Midnight and Family Members. prader-willi syndrome Association, Arizona. Prader Willi Syndrome information, National http://www.kumc.edu/gec/support/prader.html

Prader-Willi Syndrome Prader-Willi Syndrome Association (USA) 5700 Midnight Pass Rd. Sarasota, Florida 34242 USA Tel: (800) 926-4797 or (941) 312-0400 Fax: (941) 312-0142 E-mail: pwsausa@aol.com Web site: http://www.pwsausa.org includes Also See: National organizations information on genetic conditions or birth defects Information for Siblings and Family Members Prader-Willi Syndrome Association , Arizona Prader Willi Syndrome information , National Organization for Rare Disorders Ontario Prader-Willi Syndrome Association Prader-Willi Syndrome Association (UK) Prader-Willi-Syndrom Vereinigung Deutschland (Germany) To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments Revised March 1, 2001 Genetic Societies Clinical Resources Labs Clinics ... Search Genetics Education Center Debra Collins, M.S. CGC , Genetic Counselor, dcollins@kumc.edu This site subscribes to the principles of the HONcode (Health on the Net, Code of Conduct for Medical and Health Web Sites) of the Health On the Net Foundation

13. Suite101.com A forum to provide a support base for PWS without having to join one of the national or international associations, and to make people more aware of PWS. http://www.suite101.com/welcome.cfm/prader_willi_syndrome

Topics Articles Links Courses DIRECTORY COMMUNITIES BOOK CIRCLE SUITE U ... MY SUITE Search Suite101.com Search The Web Member Central Join Our Community! Login What's New Become a SuiteU Affiliate ... MemberUpdate Suite University About Suite University Suite University News Visit the University Course Listing ... FREE Demo Course New Topics Agora News Foraging Wild Foods Soapmaking All About the Olympics ... More... Suite Events Teacher Appreciation Event 2004 Family Focus 2004 In Tune With Johann Sebastian Bach More about Suite101 About Suite101.com Advertise With Suite For more information Topic Not Found The page you were looking for is in a topic that is not available in Suite101.com. The reason that the link is erroneous may be because it is to a topic that no longer exists. Click here to go to the topics directory License Info Submit Comments http://www.suite101.com/topicnotfound.cfm DIRECTORY COMMUNITIES BOOK CIRCLE SUITE U ... BIZ CENTER

14. Prader-Willi Syndrome Association (USA) praderwilli syndrome Association (USA) quot;The prader-willi syndrome Association (USA) is dedicated to serving individuals affected by prader-willi syndrome (PWS), their families, and http://rdre1.inktomi.com/click?u=http://www.pwsausa.org/&y=02DF68EAC6AE0E3F&

15. The Syndrome/Medical What is praderwilli syndrome? Respiratory Problems in prader-willi syndrome; A Comprehensive Team Approach to the management of prader-willi syndrome Pharmacia; 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 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 Frequently Asked Questions about PWS Basic Facts about PWS Medical Alert ... A Comprehensive Team Approach to the management of Prader-Willi Syndrome Pharmacia Considering Herbal Supplements Finding Psychiatric Help for your Child (PDF) History of Prader-Willi Syndrome Last edited Membership Payments Donation Form ... Email Webmaster

16. 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 Watch the Children's Miracle Network Telethon In the News Non-Discrimination Policy

17. A Description Of PWS The praderwilli syndrome Association (UK) - Web page last updated 11th July 2003 If you have any suggestions to make about this Web site, please let us know 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.

18. 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 Friday, August 13, 2004 7pm at the University Campus Taylor Stadium. Tickets are $4.00 and Wonderland Camp will receive 1/2 of every ticket sold!! For tickets please contact Jackie Bax at 573-897-9937, baxj@lincoln.edu (work), bax60590@midamerica.net (home) or you can call Gerry Moore at 314-591-2960 (cell) 636-397-6391 (home), Gmmotgrs@aol.com Don't forget you can always call Wonderland Camp at 573-392-1000. Hope to see you there!! 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. Click here to learn more about Wonderland Camp Camping Programs We offer summer camp programs from the end of May through August. Campers can enjoy the beauty of the outdoors, develop friendships, and participate in special events. Click here to learn more about our

19. Prader-Willi Syndrome - Learn More From MedlinePlus Find the latest news stories, overviews, research and more on praderwilli syndrome from MedlinePlus, the National Library of Medicine's consumer health site. http://rdre1.inktomi.com/click?u=http://www.nlm.nih.gov/medlineplus/praderwillis

20. GeneReviews: Prader-Willi Syndrome Your browser does not support HTML frames so you must view praderwilli syndrome in a slightly less readable form. Please follow this link to do so. http://www.geneclinics.org/profiles/pws/

Your browser does not support HTML frames so you must view Prader-Willi Syndrome in a slightly less readable form. Please follow this link to do so.

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