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Archived Front Page Stories

Some of the links below may not be active anymore.

2012

  • Its time to take one SMALL step for Prader-Willi Syndrome! Join a walk near you or host a walk in your own community! 100% of proceeds go to Prader-Willi Research as described in the Prader-Willi Research Plan.   One SMALL step is jointly supported by PWSA-USA and the Foundation for Prader-Willi Research (FPWR).

 

Fall 2011

  • Our blog, PWSATODAY has a new post. Read here
    Please Help Us Win $250,000! Our Utah PWSA chapter is in the running to win up to $250,000 in the Vivint contest on Facebook and we need you to VOTE EVERY DAY thru August 27! Utah will use the money for projects that will help everyone with PWS. Voting is easy and costs nothing – for instructions and more information, Click here for more information.
  • Call for Nominations...Click here.
  • Would you like to participate in an On the Move event that you can do from any location? Check out PWSA of Minnesota's Move-A-Thon at www.mnmove.pwsausaevents.org. You can choose to have 100% of the funds you raise go to PWSA (USA).
  • PWSA (USA) and FPWR are jointly supporting the One SMALL Step Walkathon to raise money for Prader-Willi Syndrome Research. All proceeds will fund the jointly developed PWS Research Plan. We already have 20 locations and with your help we can reach our goal of over 50 locations in 2011. Everyone who signs up to hosts a walk, by February 28th is entered into a draw to win an Apple iPad. Register online at http://onesmallstep.fpwr.ca

  • Have you ever wished you could go to a conference, but don't have the money or resources to go? Well here is a series of DVDs that captures the speakers at the International Conference in Taipei, Taiwan that took place May 20-23, 2010. To learn more about this offer click here
  • Evan Farrar, Executive Director, sends a message to families about Risk of Stomach Necrosis and Rupture[Click here] to read the letter.
  • How the latest computing technology influences the lives of patients with Prader-Willi Syndrome (youtube) [click here] 

  • NIH awards $117 million for Rare Diseases Clinical Research Network including Prader-Willi syndrome research...  [click here] Participants Wanted!  [click here]

  • Regional Focus and Support Groups in your area. [Click here] to learn more.

Spring/Summer 2011

  • Notes from Japan in the Aftermath of Tragedy
    Our contacts with our Prader-Willi syndrome members in Japan after the earthquake, tsunami and nuclear meltdown concerns. We have to admire their resilience and strong sense of community in helping others. It is a tragedy beyond our imagination. We pray for our PWS families – and all people living in Japan.  Click here.
  • Did you know that in the past six years PWSA (USA) has committed over 1.2 Million Dollars to fund research?  In fact, almost every major breakthrough in PWS has been made by our PWSA (USA) scientists! And each year, YOU have an opportunity to help advance this effort by participating in the Valentine Research Campaign.
     

Fall/Winter 2010/2011

  • New Clue for Understanding the Hunger of Prader-Willi Syndrome: Research Volunteers are Needed for Further Studies.  Click here for more details.

  • The collaboration of the Prader-Willi Syndrome Association ( USA), Angelman Syndrome Foundation, Inc., and the International Rett Syndrome Foundation presents “Parental Stress When Your Child Has a Developmental Disorder: Helpful Tips and Coping Strategies” and is presented by M. Paige Powell, PhD. Dr. Paige is the Coordinator, Psychology Program for Developmental Disorders Psychology Service, Texas Children’s Hospital Assistant Professor, Department of Pediatrics, Baylor College of Medicine click here to view this presentation. We want to thank the Gerald J. and Dorothy R. Friedman, New York Foundation for grant funding to PWSA (USA) that helped make this project possible.

  • Rare Diseases Clinical Research Network (RDCRN) and other research projects need you!  Click here and participate!

  • PWSA (USA) participates in the Combined Federal Campaign, and you can help! Click here for more details.

  • Clint Hurdle, PWSA (USA)’s National Spokesperson, named Manager of the Pittsburgh Pirates. To learn more…[click here]

  • Prader-Willi Syndrome Association (USA) has an Adult Advisory Board made up persons with PWS.  They met October 28-29, 2010 on Lido Key . . . read more

  • PWSA (USA Announces Evan Farrar as the permanent Executive Director of the organization.  click here for more details.

  • APX doles out $130K to local charities  Click here for details.

  • Angel Drive 2010
    It’s not too late. You can still be a 2010 Angel! Send your gift today! From all of us here at PWSA (USA) – wishing you a wonderful holiday season and the very best in 2011!
  • "My Deadly Appetite" will be running on TLC on Dec.1 at 8:00PM.  This is a great time slot for the show, and should significantly increase the number of people who will view it.  Discovery Health Channel produced this one hour special on Prader-Willi syndrome.  The story has a very positive ending with William Weaver losing 86 pounds at The Children's Institute and since returning home. His behavior has also significantly improved as has his self esteem. His father said, "He is an absolutely different child." William is now getting involved with a lot of activities and was able to buy store bought blue jeans for the first time. Through the second half of the show, you get to see how sweet and loving children and adults who have PWS can be.  Go to Discovery  Health Channel to get the details.
    Click here to read a mother's response to the show.
  • The Annual Membership Meeting for 2010 will be held telephonically on Wednesday, September 1, 2010, at 8:00 p.m., Eastern Standard Time. To join the call, please dial 1-219-509-8222. The Participant Access Code is 692767.
  • Prader-Willi Syndrome Association (USA) and the Foundation for Prader-Willi Research joint board meeting scheduled click here for details.
  • View a PWS special on North Carolina’s NC Now TV, part of UNC-TV, released in August 2010.  Click here.

  • International Prader-Willi Syndrome Organisation (IPWSO) 7th Scientific Conference Program Booklet including abstracts.  MAY 20-21, 2010, TAIPEI, TAIWAN - PDF
  • Attention all federal employees! Combined Federal Campaign (CFC) included the Prader-Willi Syndrome Association (USA)!  Click here for details.
  • View the entire episode of Extreme Makeover: Home Edition - Click here
  • PWSA ORGANIZATIONS WIN – BECAUSE OF YOUR VOTES!!  Click here for details.  Kristen Hernandez from Colorado won our give away!  Click here for more details.

Spring 2010/Summer 2010

  • US Senate Resolution Passes Supporting Designation for National Prader-Willi Syndrome Awareness Month (May 27, 2010). Click here.
  • The National Dissemination Center for Children with Disabilities is an important special education resource for parents and teachers. To learn more about their online publications and resources visit http://www.nichcy.org/InformationResources/Documents/NICHCY%20PUBS/onlinecatalog2010.pdf 
  • ABC’s Extreme Makeover: Home Edition is scheduled to re-air the episode with the Starkweather family on July 25, 2010.  Ethan, 9, has PWS. Check your local listings to confirm date & time, which is subject to change without notice.
  • The Department of Health and Human Services has created a website to assist consumers with understanding the Affordable Care Act including information specifically for people with disabilities. To learn more visit: http://www.healthcare.gov/
  • East Meets The West is the title of the IPWSO 7th International Conference held in Tapei, Taiwan. 
  • Extreme Makeover: Home Edition and Mystery Diagnosis bring national awareness for Prader-Willi syndrome. Click here to read more.
  • PWSA's former Executive Director, Craig Polhemus, advises us that he is now Vice President of StatPoint Technologies, Inc. Craig served as Executive Director of Prader-Willi Syndrome Association (USA) from June 2007 through April 2009 before his resignation.  [Click Here] for more details.

Winter 2009/Spring 2010

  • “Dance for Prader-Willi Syndrome” Utah Prader-Willi Syndrome Association fundraising event on Friday, March 12th. Compete for a $1,000 prize and keep checking back to see new entry videos that are uploaded! Learn more about the event, including how to participate, at www.upwsa.org/dance.
  • What Should be Done for People with PWS and the H1N1 Influenza (Swine Flu)?" and a letter regarding PWSA (USA)'s recommendations [Click here]

Fall 2009

  • There is a new PWS Clinic at Nationwide Children's Hospital in Columbus, Ohio. Running for almost a year, the clinic will grow to twice monthly beginning in January. Click here to read more.
  • Norma Rupe dies at 84 years old.  An active, vibrant staff member of PWSA (USA)  Click here for more information
  • Halloween Tips and Tricks by Vicki Fesko [Click here]
  • Help PWSA (USA) win $25,000 from Chase Community Giving on Facebook by December 11th and ask your friends to help, too. Click here for more information.
  • IPWSO is calling artists with Prader-Willi syndrome from all over the world to submit their work for display in the Virtual Art Gallery to be presented at the 7th International Conference held in Tapei, Taiwan, on May 21-23, 2010. The artwork can be a painting, drawing, sculpture or any other piece made by a person with Prader-Willi syndrome. Click here for a flyer.
  • Good Morning America on ABC aired a segment about PWS on Monday, August 17, 2009. To see it, click here.
  • The 20/20 segment about PWS scheduled for August 7, 2009 has been rescheduled to a date not yet determined. More information will be posted as it is known.
  • Organizational changes - a page from our current  issue of the Gathered View [Click here]
  • Listen: Janalee’s interview with Cliff Roles from Cliff on Sundays in Sarasota on 1280 AM by clicking here.
  • The National Organization to End the Waitlist (NOEWAIT) has a petition directed to the President and Members of Congress. PLEASE GO TO THE WEB SITE AND SIGN THE PETITION at http://www.gopetition.com/petitions/noewait.html 
  • The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. We encourage you to check out the site by clicking here.
  • Recently, Education Secretary Arne Duncan sent a letter to Chief State School Officers encouraging each state to review their current policies and guidelines regarding the use of restraints and seclusion techniques in schools and if appropriate develop or revise them to ensure the safety of students. Read Secretary Duncan’s letter by clicking here.

Summer 2009

  • Read The Washington Post’s June 23, 2009 article about the First International Hyperphagia Conference by clicking here. Please note: Janalee Heinemann’s, PWSA (USA) director of research and medical affairs, clarification of a misquote. She said, “I did not say, ‘I do not think there is going to be a pill.’ I said that ‘I do not think it will be so simple to find the right pill as I once thought.’…It still is good publicity.”
  • Watch: Good Morning America, date to be determined, which will feature a segment about PWS with Kate Kane, 28 with PWS.
  • The PWS, Angelman and Rett consortium of the NIH Rare Disease Center grant will be refunded for another 5 years entirely funded through the National Institute of Child Health and Human Development (NICHD). Dr. Dan Driscoll, who is the chairperson for the PWS section of the grant stated, “The families deserve a large amount of credit for the continued success of this national research effort”
  • Sign-On in Support of the IDEA Fairness Restoration Act (HR 2740) click here
  • The Consumer Guides to Getting and Keeping Health Insurance, which are researched and published by Georgetown University’s Health Policy Institute, are now available free online at http://www.healthinsuranceinfo.net. We encourage you to use this resource.
  • Find us on Facebook! Click here to join our Cause and dedicate your page to raising PWS awareness.
  • UPDATE- Funding is secured - Thank you for your help.
    Our PWS researchers are at risk of losing funding for the five year renewal for the NIH Rare Disease Consortium for Angelman, Rett, and Prader-Willi Syndromes. Help us by sending a letter via email or fax to Duane Alexander, director of the NICHD, no later than June 7th by clicking here as well as your State Representatives. Find your State Representatives by clicking here. We make it easy – use our sample letter here.
  • Looking for a Father’s Day Gift? Check out the Monkey Made of Sockies for your golfer. Daphne’s Headcovers has teamed up with LPGA touring professional Leta Lindley, and Shannon Grissom, the creator of the Monkey Made of Sockies character in support of the Prader-Willi Syndrome Association (USA). Find out more by clicking here  

 

Spring 2009

  • It’s PWS Awareness Month. You can help increase awareness about PWS by doing just one thing. Click here for ideas on what you can do to help.
  • Hyperphagia, Scientific and Care Providers Conferences are being held in Baltimore, MD on June 4-5, 2009 [Click here] for more details.
  • In time for PWS Awareness Month of May, read Janalee Heinemann’s article about PWS in Parenting Special Needs Magazine. Click here.
  • On May 6, families in the state of Georgia will meet with their governor who will present them with a signed Proclamation recognizing May as PWS Awareness Month!  The governor will pose with the group for photos, too. Thanks Georgia families for making this great awareness happen!
  • Daphne's Headcovers, the original headcover company, has teamed up with LPGA touring professional Leta Lindley, and Shannon Grissom, the creator of the Monkey Made of Sockies character in support of the Prader-Willi Syndrome Association (USA). Find out more, including how you can obtain this adorable golf club headcover, by clicking here.
  • Lisa Peters, mom to Nicholas with PWS and an outstanding writer will have her story, "A Life Less Perfect" published in an upcoming issue of "A Cup of Comfort.” Her story was selected as a grand prize winner and will be the lead story in the upcoming issue of “A Cup of Comfort for Parents of Children with Special Needs.” The book will be released in May 2009. Click here to read her story.
  • Click here to check out the upcoming fundraisers supporting PWSA (USA). Grassroots fundraising provides much needing funding for PWSA (USA). During these times, we hope you will attend an exciting event near you – or even think of doing your own! Contact Jodi O’Sullivan at josullivan@pwsausa.org  for more information.
  • In February, Crisis Intervention Counselor Evan Farrar attended the Fifth Annual Traumatology Symposium sponsored by Argosy University in Sarasota where he is also a student in the Masters of Mental Health Counseling program.
  • Two babies with PWS are seeking homes and are up for adoption. Click here to read more about them, their stories and how you can welcome them into your life.

Winter 2008-09

  • Phyllis Tetrino-Ferone has written a children’s poetry book. “Children Lost and Children Found.” $.50 from each sale of the book is to come to PWSA (USA)
  • Eastside High School Pep Rally raised $224,000 and donated to PWSA (USA) for crisis and family support services.

Fall 2008

  • International (IPWSO) president, Pam Eisen passed away 11/19/2008... [Click for more]
  • 2009 Conferences... [Click for more]
  • A joint statement has been issued by PWSA (USA) and FPWR... [click for more]
  • Support H. Res. 1386 for National Prader-Willi Month and More Research Funding... [click for more]
  • At the National Membership Meeting, Executive Director Craig Polhemus, “It’s been an exciting year. For the first time in history, families of those with PWS have access 24 hours a day, 7 days a week, to emergency medical counseling and referral . . .. [click for more]
  • PWSA (USA) Co-Chair Carol Hearn and Finance Committee Chair Steve Leightman say, “PWSA (USA) urgently needs your help. Do you share our vision of a world where everyone with PWS receives an early diagnosis, terrific medical care, insurance benefits, and a free and appropriate education . . . “ [click for more]

 

Items from home page prior to conversion - August 2008

bullet Prader-Willi Syndrome Association (USA) Praises Congress for Postponing
Vote on Bills Restricting Access to Human Growth Hormone Click here 
bullet Thanks from the Hurdle Family Click here
bullet Rare Donation Continues To Give Five Years Later Click here
bullet PWSA of Oregon - Christmas Party 2007 on YOU TUBE! Click here
bullet Time to plan for Summer Camp!  Click here
bullet National PWS awareness in the NASCAR Craftsman Truck Series on Friday, November 16, 2007... Click here
bullet Prader-Willi Syndrome Association to participate in CIBC World ...Click here
bullet Clint Hurdle from the Colorado Rockies - National Spokesperson - Click here
bullet To view the scientific abstracts, biographies and other documentation related to the 6th IPWSO (our international organization) Conference that was hosted in Romania, go to Click Here

Conference...

bullet Photos from 2007 Dallas Click here
bullet Photos from 2008 Milwaukee will be available soon!
bullet Scientific Abstracts are available in members only
bullet SSI Resource
bullet 2007 Annual Report (2.66MB)
bullet

Get the newsletter, The Gathered View, electronically Click here

bullet Heinemann elected Co-Chair of the Coalition of Patient Advocacy Groups (CPAG) - Click here
bullet Strategic Plan 2007-2012
bullet Organization Volunteers Needed
bullet People with PWS database - BE COUNTED!
FREE MEDICAL ALERT BOOKLET
Special Offers

bullet Refrigerator Locks
New Medical & Research...
bullet Expected Significance of Current Research Sponsored by PWSA (USA) July 2008 Reported By: Janalee Heinemann, MSW Director of Research & Medical Affairs
bullet Growth Hormone Treatment in PWS -Updated!
bullet Selective Deletion of Bdnf in the Ventromedial and Dorsomedial Hypothalamus of Adult Mice Results in Hyperphagic Behavior and Obesity  Click here
bullet Research Funding Opportunities from PWSA (USA) - 2008 Dates posted
bullet Prader-Willi Syndrome and Early-onset Morbid Obesity Natural History Clinical Study
bullet A study to evaluate the effect of a new weight loss drug on body weight and appetite of subjects with Prader-Willi Syndrome  Click here
bullet PWSA (USA) Scientific and Clinical Advisory Board Publications -Click here
bullet Health Care Professionals Database Update PWSA (USA) needs your help! - Click here
bullet Grant Looking at Behavior and What Helps
bullet Tell me about the good stuff: Positive Growth in Parents - Click here
bullet Participants needed - Click here
bullet Other Research...
New Publications..
bullet School Education DVD
bullet Sibling Booklet
bullet Grandparent Booklet
bullet 3rd Edition of the Management of Prader-Willi Syndrome Book
bullet Other publications...

Edited: 12/11/2012

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