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PCOSA's History

The Polycystic Ovarian Syndrome Association began as a truly virtual organization. Its roots are in an Internet newsgroup called alt.infertility. In mid-1995, several women noticed that they were all responding to the same posted questions about polycystic ovary syndrome and were sending e-mails to each other for mutual support and information. Christine Gray DeZarn, an active member of this budding cyberspace community, assembled a list of participants and sent an e-mail to everyone requesting that they each copy every post to everyone on the list.

Almost immediately, the list of people participating began to grow and it became difficult to manage. As a partial solution, Melissa Baxter volunteered to create daily bulletins for everyone. Participants sent their e-mail to Melissa, and she compiled them into a single e-mail for everyone. The subscriber list climbed to well over 100 people. Mary Clark, future Board Chair of the PCOSA (1997-2003), discovered that her Internet Service Provider provided a free mailing list function, and volunteered to set up an automated list for the group.

Within a short period of time, over 500 individuals subscribed to the email list. Web sites devoted specifically to PCOS began popping up. Information that had been difficult to get from doctors was now being shared freely online. By November 1996, it was obvious that women with PCOS had accomplished as much as was possible in cyberspace without creating a formal organization.

Christine Gray DeZarn polled the various groups to see if there was any interest in putting together a conference. Based on the results of that initial survey, the PCOSA inaugural conference was held in Baltimore, Maryland, May 16-18, 1997. Over 100 women and health care professionals were in attendance. The PCOSA held its 3rd PCOSupport International Conference June 1-3, 2000, in San Diego, CA. The 2001 Conference was held June 7-9 in Philadelphia. The 2002 Conference will be held in Minneapolis, Minnesota, May 30-June 1.

The PCOSA now has a premiere web site, an array of email lists and local chapters in nearly every state and over 15 countries worldwide. In 1999, the PCOSA took a giant step forward when it hired its first employee, Kristin Rencher, as Executive Director. The PCOSA now has 4 paid staff and over 100 active volunteers.

Media coverage in the March 2000 issue of Women's Day magazine and on Dateline NBC in December of 1999 have propelled the organization forward as it strives to educate the public about PCOS.