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The History of AIS-DSD Support Group Charmian A. Quigley, MBBS Associate Professor of Pediatric Endocrinology Indiana University School of Medicine Medical.

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Presentation on theme: "The History of AIS-DSD Support Group Charmian A. Quigley, MBBS Associate Professor of Pediatric Endocrinology Indiana University School of Medicine Medical."— Presentation transcript:

1 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 20 th July, 2014

2 History of AIS-DSD SG : Morris describes "Testicular Feminization“ AKA “Morris Syndrome”

3 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.”

4 History of AIS-DSD SG : DNA discovered 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1959 Chromosomes discovered 1988: Margaret Simmonds starts AISSG (UK)

5 1988: Androgen Insensitivity Support Group (UK) Established by Margaret Simmonds

6 History of AIS-DSD SG : DNA discovered 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1959 Chromosomes discovered 1988: Margaret Simmonds starts AISSG (UK) 1993: Bo Laurent Founds ISNA

7 1993: Intersex Society of North America 7 “Cheryl Chase”

8 History of AIS-DSD SG : DNA discovered 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1959 Chromosomes discovered 1988: Margaret Simmonds starts AISSG (UK) 1993: Bo Laurent Founds ISNA 1995: Sheri Groveman attends AISSG meetings in UK 1995: Sheri Groveman starts AISSG-USA

9 Sherri Groveman Morris: founder of AIS-SG Sherri: “It is the culmination of my life’s dream to have others with whom to share my thoughts and feelings about having AIS.” Sherri shared the incredible thrill she experienced “to realize there was support after feeling alone on the planet for 36 years.”

10 History of AIS-DSD SG : DNA discovered 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1959 Chromosomes discovered 1988: Margaret Simmonds starts AISSG (UK) 1993: Bo Laurent Founds ISNA 1995: Sheri Groveman attends AISSG meetings in UK 1995: Sheri Groveman starts AISSG-USA Sept : 1st meeting of AISSG in NYC

11 September 7, 1996: AISSG Inaugural Meeting in NYC

12 History of AIS-DSD SG Annual meetings New York 1997 – San Diego 1998 – Chicago 1999 – Seattle Created by webmaven Cindy Stone

13 Why the Orchid?

14 History of AIS-DSD SG Annual meetings New York 1997 – San Diego 1998 – Chicago 1999 – Seattle 2000 – Boston 2001 – Denver 2002 – St Louis 2003 – Toronto Created by webmaven Cindy Stone

15 History of AIS-DSD SG Annual meetings 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 Nashville 2011 – Seattle 2012 – Oklahoma City 2012 – Oklahoma City 2013 – Boston 2013 – Boston San Francisco (#19) San Francisco (#19) Created by webmaven Cindy Stone

16 History of AIS-DSD SG : DNA discovered 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1959 Chromosomes discovered 1988: Margaret Simmonds starts AISSG (UK) Sept : 1st meeting of AISSG in NYC 1993: Bo Laurent Founds ISNA 1995: Sheri Groveman attends AISSG meetings in UK 1995: Sheri Groveman starts AISSG-USA 2000: Arlene Baratz attends her 1 st meeting 1997: Donna L joins Sherri in organizing AISSG 2006 Teen track added to meeting program 2000: 501(c)(3) status achieved 2002: Susie D becomes treasurer 2004: start of parents’ circle ~2001: AISSG listerv begins 2006 “Chicago Consensus Statement” published 2011 AISSG becomes AIS-DSD-SG-FWAF 2014: Beyond gender binary (all gender bathroom) 2013: men’s track added to meeting program; AIS-DSD SG drops the “FWAF” part

17 Membership Website/logo Support group name 2011: group changes name AISDSDSGFWAF = “Androgen Insensitivity Syndrome- Disorders of Sex Development Support Group for Women and Families” (AISDSDSGFWAF) Changes Over Time

18 Original Website Up to I Think

19 Website Logo Mid-Late 2000s Created by webmaven Cindy Stone

20 Updated Website ~2011

21 Current Website 2014

22 Jeanne Nollman Jane Goto Amber Jones Georgiann Davis Other board members AND THANK YOU

23 Membership Support group name Name used at annual meetings and names on name badges Website Logo Diversity Balance (support/advocacy) Changes Over Time


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