2012 AIS-DSD Meeting–Jeanne Nollman

Message from Jeanne Nollman

President

AIS-DSD Support Group for Women & Families

 Impressions of our annual conference–Finding self and embracing community

Our 2012 annual conference in Oklahoma City was a wild success.  The temperatures were fairly mild, and the hotel was very welcoming.  We had about 125 registered participants.  A third were DSD women/children, another third family members/parents, and the remaining third comprised of medical professionals and allies.  Many in attendance were first timers.  Our attendees came from all over the United States, and as far as Italy, Brazil, U.K., and from Canada.

Arlene Baratz, mother of two AIS women, medical advisor, and co-moderator of the parent group, hosted a spectacular conference.  There was a diverse mixture of seminars/workshops that provided information and support to all of our attendees.  Subjects covered this year included: mental health, advocacy, DSD 101, informed consent, infertility, adoption, PTSD, and disclosure.  A considerable amount of time was set aside for participants to be able to share their stories. We also had a special Congenital Adrenal Hyperplasia (CAH) track this year. We are eager to develop programming and opportunities for participation in this critically underserved community.

Seminars/workshops were geared towards DSD teens, adults, and parents/families. Childcare was provided for the little ones. Seminars/workshops were lead by physicians, psychologists, social workers, lawyers, and DSD leaders in the community. The keynote address by Bo Laurent was riveting.  She gave us a personal account of the birth of intersex awareness and how intersex/DSD advocacy has evolved.

Thank you!

This year we did not have a silent auction but instead raffled off donated items.  The raffle was a huge financial success and a whole lot of fun!  Thank you to everyone that brought or sent something for the raffle. A big thank-you to all our volunteers and raffle ticket sellers.  Proceeds help fund scholarships to those in need who would otherwise be unable to attend the conference.  Big thanks also to all who made donations to AIS-DSD.  These donations fund scholarships and pay for services that keep the organization running smoothly.

Continuing Medical Education

This year we had a great showing (approx. 65) of medical professionals at our third annual one-day medical conference. Participation is growing every year and we have high hopes that projects will spring forth as a result of some brainstorming sessions to look at improving standards of care for individuals and families impacted by Disorders of Sex Development.

Concurrent track for males with DSDs planned for 2013

As some of you may know, an online men’s DSD support group was formed this year.  It currently has a handful of men involved.  At the conference we had several male children with a DSDs in attendance. The board has approved a male DSD track to run concurrently with our conference in 2013.  We feel this is a “best practices” move to service our male children who will soon be adults.

Plan now to join us in Boston next summer.

We are excited to announce that our next annual conference will be in Boston, Massachusetts. Tentative plans are underway for future conferences in San Francisco (2014) and Cincinnati (2015).  When planning future conferences, we look at finding a medical facility that has a DSD team, affordable airline fares, and a hotel that can accommodate our needs.

We’re here for you.

To become involved in our email circles and private social media for affected adults, parents, teens and emerging adults, write us at AISDSD AT HOTMAIL DOT COM and be sure to check in at WWW.AISDSD.ORG for more info and the latest news on conference planning.

President-Jeanne Nollman

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