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

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

Website
Logo
Diversity
Balance (support/advocacy)