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Historical Dates for Prader-Willi Syndrome Association (USA) and PWS1975 “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
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 2007
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