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ABOUT PWSA (USA)

PWSA (USA) was organized in 1975 to provide support for individuals, families, professionals and organizations and to be a resource for education and information about Prader-Willi syndrome. The organization was first headquartered in Minneapolis, then moved to St. Louis, Missouri, and then found its permanent home in Sarasota, Florida in October of 1997. The association is governed by a national board of directors. The board works in conjunction with the paid and volunteer staff of the national headquarters, and a network of chapters throughout the country to direct the organization's operations and serve its members.

WE PROMISE TO

- Provide emotional support to families and caregivers, and nurturing a sense of hope, strength and connection as we strive together to improve the quality of life of individuals with Prader-Willi syndrome

- Take a leadership role in supporting and stimulating research, which will ultimately lead to a cure

- Provide education and resources in order to improve the quality of life for everyone with the syndrome as well as the people who support them

- Instill a sense of compassion and understanding through our dedication to providing awareness and enlightened knowledge about the syndrome

- Secure the resources necessary to accomplish our goals

ONLY ORGANIZATION THAT PROVIDES:

90%
Research
90%
Medical Support
90%
Crisis Support
90%
Family Support
90%
New Parent Mentoring Support
90%
New Diagnosis
90%
Education Intervention
90%
School Support

Our mission & vision

Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome. Prader-Willi Syndrome Association (USA) will be a self-sustaining, internationally recognized leader, empowering those affected with Prader-Willi syndrome to enjoy a productive life in an informed and accepting community.

Our Staff

Ken Smith
Jack Hannings
Debi Applebee
Donny Moore
Leanne Gilliland
Evan Farrar, M.A.
Kate F. Beaver, MSW, CSW
Stacy Ward
Diane Seely
Lori Moline
Janalee Heinemann
Carolyn Loker
Kathy Clark
Jen Bolander
Kristen Starkey
Jai Ojha
Lorraine Hickok
Ruby Plummer
Sara Dwyer
Lota Mitchell

OUR HISTORY

1975

  • “Prader-Willi Syndrome Parents and Friends”, soon to be renamed “Prader-Willi Syndrome Association”, was established by Gene and Fausta Deterling, parents of a son with PWS, with the support of Dr. Vanja Holm, of the Child Development and Retardation Center in Seattle, Washington

1976

  • Association grows to 140 members, including some from other countries

1977

  • PWSA officially incorporates, with Gene Deterling as first President, and Delfin Beltran as first Chairman of the Board

1978

  • In addition to the newsletter, the Gathered View, PWSA’s first publication, a booklet entitled Prader-Willi Syndrome, A Handbook for Parents, by Shirley Neason (also editor of the GV) was made available

1979

  • The first annual national conference was held in Minneapolis, Minnesota. 165 adults, 15 with PWS, and 15 siblings attended

1980

  • Marge Wett appointed as first Executive Director, office in her house
  • Delfin Beltran becomes second national President, and Richard Wett becomes second Chairman of the Board
  • National conference at Hyannis Port, Massachusetts

1981

  • Deletion in long arm of chromosome 15 was identified as the cause of many cases of PWS
  • National conference at Boca Raton, Florida

1982

  • National conference at Overland Park, Kansas

1983

  • Deletion in long arm of chromosome 15 was determined to come from the contribution of the father to the chromosome pair
  • National conference at San Diego, California

1984

  • First salaried staff in addition to the Executive Director is hired
  • National conference at Minneapolis, Minnesota. Dr. Andrea Prader himself attended

1985

  • First Scientific Conference held, in conjunction with the annual national conference
  • National conference at Windsor Locks, Connecticut

1986

  • Lota Mitchell becomes third Chairman of the Board
  • National conference at Sacramento, California

1987

  • National conference at Houston, Texas

1988

  • PWSA gets its first official office in Minneapolis, Minnesota. (Until then it had been in the Wetts’ house.)
  • National conference at Louisville, Kentucky

1989

  • C.I.T. (Crisis Intervention and Training) Fund created from National Developmental Center Fund
  • Maternal uniparental disomy, or UPD (meaning both of the 15th chromosome pair came from the mother) was identified, accounting for the cause of most of the non-deletion PWS cases
  • National conference at Calgary, Alberta, Canada

1990

  • National conference at Salt Lake City, Utah

1991

  • Janalee Tomaseski-Heinemann becomes third national President. “800” line service begins
  • First International Conference held in Holland
  • Deterling Fund (for research) established. C.I.T. Fund renamed in honor of the Wetts
  • National conference at Lincolnwood, Illinois

1992

  • Mission statement formalized. PWSA becomes PWSA(USA)
  • Curt Shacklett becomes fourth Chairman of the Board
  • Terri Schaefer becomes Executive Director
  • National conference at Philadelphia, PA

1993

  • Jim Kane becomes fifth Chairman of the Board
  • National conference at Scottsdale, Arizona

1994

  • National office relocates to St. Louis, MO
  • Russell Myler becomes Executive Director
  • Jerry Park becomes fourth President of PWSA(USA)
  • National conference at Atlanta, Georgia

1995

  • National conference at Seattle, Washington

1996

  • National conference at St. Louis, Missouri

1997

  • National office relocates to Sarasota, Florida. Janalee Heinemann becomes Executive Director
  • National conference at Orlando, Florida

1998

  • Barb Dorn becomes sixth President of PWSA(USA)
  • First major study reported on comparing children with PWS on Growth Hormone with a similar group not treated with Growth Hormone, validating the benefits of such treatment
  • National conference at Columbus, Ohio

1999

  • Ken Smith becomes Chairman of the Board
  • National conference at San Diego, California

2000

  • By now growth hormone has become a standard treatment for PWS, and FDA approves its use for PWS
  • National conference at Pittsburgh, Pennsylvania

2001

  • Lota Mitchell becomes seventh President of PWSA(USA)
  • National/International conference at Minneapolis, Minnesota
  • New Parent Mentoring Program began

2002

  • National conference at Salt Lake City, Utah (first “mini-conference”, providing child care only up through the age of eight)

2003

  • National conference at Orlando, Florida

2004

  • National Conference at Huron, Ohio
  • Carolyn Loker became President of PWSA (USA)
  • Carol Hearn became PWSA (USA) board chairperson

2005

  • 30 year Anniversary of Prader-Willi Syndrome Association (USA)
  • National conference at Orlando, Florida
  • Ken Smith joined Carol Hearn as co-chairs of PWSA (USA)

2006

  • 50 years since Prader-Willi syndrome was first identified
  • National conference on Grand Island, NY
  • Care Providers Advisory Board was established
  • the new Hungry for a Cure logo and tag line were adopted

2007

  • National conference in Dallas, Texas
  • National office moved to 8588 Potter Park Drive, Suite 500, Sarasota, Florida 34238
  • Restructure of board eliminated the need for a president, vice-president for the national organization
  • Carol Hearn, Board Chair, Ken Smith, Vice-chair
  • The Gathered View begins to be sent electronically

2008

  • National conference in Milwaukee, Wisconsin
  • Bylaws were amended to allow for a 15-member board of directors
  • Carol Hearn, Board Chair, Ken Smith, Vice-chair

2009

  • First International Hyperphagia Conference in Baltimore, MD
  • John Heybach, Board Chair, Ken Smith, Vice-chair

2010

  • John Heybach, Board Chair, Ken Smith, Vice-chair
  • The Webinar program was launched

2011

  • National Conference in Orlando, FL
  • John Heybach, Board Chair, Ken Smith, Vice-chair
  • On The Move national awareness and fundraising campaign begins

2012

  • Second International Hyperphagia Conference in Baton Rouge, LA
  • John Heybach, Board Chair, Ken Smith, Vice-chair

2013

  • National Conference in Orlando, FL
  • Ken Smith appointed Executive Director
  • Michelle Torbert, Board Chair
  • Wyatt Special Education Advocacy Training Program holds its first training session

2014

  • Third International Hyperphagia and Obesity Week Conference in Boston, MA
  • Michelle Torbert, Board Chair, Jim Koerber, Vice-Chair
  • New Website debuts

2015

  • National Conference in Orlando, FL
  • 40 year anniversary of PWSA (USA)
  • Michelle Torbert, Board Chair, Jim Koerber, Vice-Chair
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