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The History of AIS-DSD Support Group

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. History of AIS-DSD SG.

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The History of AIS-DSD Support Group

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  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 20th July, 2014

  2. History of AIS-DSD SG 1950 1990 1995 2000 2005 2010 2015 1953: 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 1953: DNA discovered 1959 Chromosomes discovered 1950 1990 1995 2000 2005 2010 2015 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1988: Margaret Simmonds starts AISSG (UK)

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

  6. History of AIS-DSD SG 1953: DNA discovered 1959 Chromosomes discovered 1993: Bo Laurent Founds ISNA 1950 1990 1995 2000 2005 2010 2015 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1988: Margaret Simmonds starts AISSG (UK)

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

  8. History of AIS-DSD SG 1953: DNA discovered 1995: Sheri Groveman attends AISSG meetings in UK 1995: Sheri Groveman starts AISSG-USA 1959 Chromosomes discovered 1993: Bo Laurent Founds ISNA 1950 1990 1995 2000 2005 2010 2015 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 1988: Margaret Simmonds starts AISSG (UK)

  9. Sherri GrovemanMorris: 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.”

  10. History of AIS-DSD SG 1953: DNA discovered 1995: Sheri Groveman attends AISSG meetings in UK 1995: Sheri Groveman starts AISSG-USA 1959 Chromosomes discovered 1993: Bo Laurent Founds ISNA 1950 1990 1995 2000 2005 2010 2015 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” Sept 7 1996: 1st meeting of AISSG in NYC 1988: Margaret Simmonds starts AISSG (UK)

  11. September 7, 1996: AISSG Inaugural Meeting in NYC

  12. Created by webmaven Cindy Stone History of AIS-DSD SG • Annual meetings • 1996 - New York • 1997 – San Diego • 1998 – Chicago • 1999 – Seattle

  13. Why the Orchid?

  14. 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

  15. Created by webmaven Cindy Stone History of AIS-DSD SG • 2011 – Seattle • 2012 – Oklahoma City • 2013 – Boston • 2014 - San Francisco (#19) • 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

  16. History of AIS-DSD SG ~2001: AISSG listerv begins 1953: DNA discovered 2000: Arlene Baratz attends her 1st meeting 1995: Sheri Groveman attends AISSG meetings in UK 2011 AISSG becomes AIS-DSD-SG-FWAF 2006 “Chicago Consensus Statement” published 2006 Teen track added to meeting program 1995: Sheri Groveman starts AISSG-USA 1959 Chromosomes discovered 2014: Beyond gender binary (all gender bathroom) 1993: Bo Laurent Founds ISNA 1997: Donna L joins Sherri in organizing AISSG 1950 1990 1995 2000 2005 2010 2015 1953: Morris describes "Testicular Feminization“ AKA “Morris Syndrome” 2004: start of parents’ email circle 2013: men’s track added to meeting program; AIS-DSD SG drops the “FWAF” part Sept 7 1996: 1st meeting of AISSG in NYC 1988: Margaret Simmonds starts AISSG (UK) 2002: Susie D becomes treasurer 2000: 501(c)(3) status achieved

  17. Changes Over Time • 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)

  18. Original Website Up to 2005 . . . I Think

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

  20. Updated Website ~2011

  21. Current Website 2014

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

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

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