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Prader-willi Syndrome:     more books (67)

Prader-willi Syndrome: Coping With the Disease - Living With Those Involved by Urs Eiholzer, 2005-05-31 Prader-Willi Syndrome: A practical guide (Resource Materials for Teachers) by Jackie Waters, 1999-07-01 Management of Prader-Willi Syndrome Prader-Willi Syndrome: Development and Manifestations by Joyce Whittington, Tony Holland, 2010-12-09 Prader-Willi Syndrome - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References by ICON Health Publications, 2004-04-27 Management of Prader-Willi Syndrome Prader-Willi Syndrome: Development and Manifestations by Joyce Whittington, Tony Holland, 2004-05-24 Babies and Children with Prader-Willi Syndrome: A Handbook for Parents and Carers by Jackie Waters, Margaret Gellatly, 2001-08-01 The Prader-Willi Syndrome Prader-Willi Syndrome: Selected Research and Management Issues Prader-Willi Syndrome As a Model for Obesity: International Symposium, Zurich, October 18-19, 2002 Prader-Willi Syndrome: A Handbook for Parents by Shirley Neason, 1985-06 Prader-Willi Syndrome: and Other Chromosome 15q Deletion Disorders (NATO ASI Series / Cell Biology) Prader-Willi Syndrome: Selected Research and Management Issues

lists with details

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/

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/

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/
   
   Extractions: 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
   
   Extractions: 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. 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/
   
   Extractions: 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
   
   Extractions: 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

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/
    
    Extractions: 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 Medical Concerns Anesthesia and PWS Respiratory Problems in Prader-Willi Syndrome Recommendations for Evaluation of Breathing Abnormalities Associated with Sleep in Prader Willi Syndrome 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

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

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
    
    Extractions: @import url(/medlineplus/images/advanced.css); Skip navigation Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Contents of this page: 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/
    
    Extractions: 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
    
    Extractions: What's your interest? Who we are/ What we do What's new/ Events What is PWS ... More about PWS Early Years Primary School Years Teenage Years Adults with PWS ... Living with PWS 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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