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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 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

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
History of AIS-DSD SG

1950 1990 1995 2000 2005 2010 2015

1953: Morris describes

"Testicular Feminization“

AKA “Morris Syndrome”


Dr j morris 1953
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 sg1
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)


1988 androgen insensitivity support group uk
1988: Androgen Insensitivity Support Group (UK)

  • Established by Margaret Simmonds


History of ais dsd sg2
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)



History of ais dsd sg3
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)


Sherri groveman morris founder of ais sg
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.”


History of ais dsd sg4
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)



History of ais dsd sg5

Created by webmaven Cindy Stone

History of AIS-DSD SG

  • Annual meetings

    • 1996 - New York

    • 1997 – San Diego

    • 1998 – Chicago

    • 1999 – Seattle



History of ais dsd sg6

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


History of ais dsd sg7

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


History of ais dsd sg8
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


Changes over time
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)


Original Website Up to 2005 . . . I Think


Website logo mid late 2000s

Created by webmaven Cindy Stone

Website Logo Mid-Late 2000s




Thank you
THANK YOU

  • Jeanne Nollman

  • Jane Goto

  • Amber Jones

  • Georgiann Davis

  • Other board members

  • AND . . . . . .


Changes over time1
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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