The History of AIS-DSD Support Group Charmian A. Quigley, MBBS Associate Professor of Pediatric Endocrinology Indiana University School of Medicine Medical Advisor to AIS-DSD Support Group (USA) San Francisco, CA 20th July, 2014 History of AIS-DSD SG 1950 1990 1995 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 2000 2005 2010 2015 Dr J Morris, 1953: “It goes without saying that it would be unwise to inform the patient of the true state of affairs . . it seems only necessary to state that childbearing is impossible.” History of AIS-DSD SG 1953: DNA discovered 1959 Chromosomes discovered 1950 1990 1995 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1988: Margaret Simmonds starts AISSG (UK) 2000 2005 2010 2015 1988: Androgen Insensitivity Support Group (UK) • Established by Margaret Simmonds History of AIS-DSD SG 1953: DNA discovered 1959 Chromosomes discovered 1993: Bo Laurent Founds ISNA 1950 1990 1995 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1988: Margaret Simmonds starts AISSG (UK) 2000 2005 2010 2015 1993: Intersex Society of North America “Cheryl Chase” 7 History of AIS-DSD SG 1995: 1953: DNA Sheri Groveman discovered attends AISSG 1995: in UK 1959meetings Sheri Groveman Chromosomes starts AISSG-USA discovered 1993: Bo Laurent Founds ISNA 1950 1990 1995 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1988: Margaret Simmonds starts AISSG (UK) 2000 2005 2010 2015 Sherri Groveman Morris: founder of AIS-SG Sherri shared the incredible thrill she experienced “to realize there was support after feeling alone on the planet for 36 years.” Sherri: “It is the culmination of my life’s dream to have others with whom to share my thoughts and feelings about having AIS.” History of AIS-DSD SG 1995: 1953: DNA Sheri Groveman discovered attends AISSG 1995: in UK 1959meetings Sheri Groveman Chromosomes starts AISSG-USA discovered 1993: Bo Laurent Founds ISNA 1950 1990 1995 2000 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” Sept 7 1996: 1988: 1st meeting of AISSG in NYC Margaret Simmonds starts AISSG (UK) 2005 2010 2015 September 7, 1996: AISSG Inaugural Meeting in NYC History of AIS-DSD SG Annual meetings 1996 - New York 1997 – San Diego 1998 – Chicago 1999 – Seattle Created by webmaven Cindy Stone Why the Orchid? History of AIS-DSD SG Annual meetings 1996 - New York 1997 – San Diego 1998 – Chicago 1999 – Seattle 2000 – Boston 2001 – Denver 2002 – St Louis 2003 – Toronto Created by webmaven Cindy Stone History of AIS-DSD SG Annual meetings 1996 - New York 1997 – San Diego 1998 – Chicago 1999 – Seattle 2000 – Boston 2001 – Denver 2002 – St Louis 2003 – Toronto 2004 – Madison 2005 – Palo Alto 2006 – Bloomington 2007 – Raleigh 2008 – Chicago 2009 – Dallas 2010 - Nashville 2011 – Seattle 2012 – Oklahoma City 2013 – Boston 2014 - San Francisco (#19) Created by webmaven Cindy Stone History of AIS-DSD SG 2000: ArleneAISSG Baratz ~2001: 1995: 2011 1953: DNA 2006 attends her listerv begins Sheri Groveman AISSG becomes st meeting “Chicago Consensus 1 2006 discovered attends AISSG AIS-DSD-SG-FWAF Statement” Teen track added to 1995: in UK 1959meetings published meeting program Sheri Groveman Chromosomes starts AISSG-USA discovered 2014: 1993: Bo Laurent Beyond gender binary 1997: Donna L Founds ISNA (all gender bathroom) joins Sherri in organizing AISSG 1950 1990 1995 2000 2005 2010 2015 1953: Morris describes 2004: start of "Testicular Feminization“ 2013: men’s track parents’ email circle AKA “Morris Syndrome” added to Sept 7 1996: 2002: Susie D meeting program; 1988: 1st meeting becomes AIS-DSD SG drops 2000: of AISSG in NYC 501(c)(3) Margaret Simmonds treasurer the “FWAF” part status achieved starts AISSG (UK) Changes Over Time Membership Website/logo Support group name 2011: group changes name AISDSDSGFWAF = “Androgen Insensitivity SyndromeDisorders of Sex Development Support Group for Women and Families” (AISDSDSGFWAF) Original Website Up to 2005 . . . I Think Website Logo Mid-Late 2000s Created by webmaven Cindy Stone Updated Website ~2011 Current Website 2014 THANK YOU Jeanne Nollman Jane Goto Amber Jones Georgiann Davis Other board members AND . . . . . . Changes Over Time Membership Support group name Name used at annual meetings and names on name badges Website Logo Diversity Balance (support/advocacy)