Historical Dates for Prader-Willi Syndrome Association (USA) and PWS

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, Pennsylvania

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

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

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

2007

National conference in Dallas, Texas

Craig Polhemus became the executive director for PWSA (USA)

Janalee Heinemann became director of research and medical affairs

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

2008

National conference in Milwaukee, Wisconsin