Much Good News from the 2011 AIS-DSD Support Group Meeting

We asked Jeanne Nollman, the President of the AIS-DSD Support Group for Women and Families (formerly the AIS Support Group), to provide this news to Accord Alliance's readers about the group's 2011 conference. Jeanne is very active in the DSD world and is engaged in many exciting outreach projects. She has been helping to develop support for families at UCSF and Stanford University and has been doing major educational outreach, including through DSD Discourse, and most recently with foster care agencies whose clients include children with DSD. (The photo at left is from the meeting. Jeanne is in the front row, second from right, and Accord Alliance's Janet Green is in the center of the picture.)

As readers of the Accord Alliance blog may already know, this year the AIS Support Group in the United States changed its name to better reflect who we are and who we serve. In July, we met in Seattle for the first time under our new name: the AIS-DSD Support Group for Women and Families. The meeting was a smashing success. Over 140 people, including affected individuals—adults, teens, and children—and their family members joined us for four days of support, education, and fun.

About a third of those attending were first-timers, and nearly half were parents of affected children. We're thrilled to see that our organization is increasingly providing support for whole families. We also saw an increase in the number of husbands attending with their DSD-affected wives, continuing on the AISSG tradition of partnership attendance. Participants came from South Africa, Argentina, Australia, Japan, China, the U.K., Canada, and all over the United States.

Many of our attendees were interested in working on advocacy, so we have been forming multiple committees dedicated to that work. For example, a group of our parents are now working to develop a new brochure for us—material that can be made easily available in doctors' offices—and are preparing letters for schools to make them aware of the existence of and needs of DSD-affected children. Adoption was also a big issue this year for affected women interested in becoming mothers through adoption. I'm happy to report that, just since our conference, one of our members has adopted a child, and another adoption is in progress. One of the women with Swyer's in our group also gave birth recently.

Our program this year included a full day of CME (Continuing Medical Education) for clinicians, and there was not an empty seat in the house! This happened in conjunction with Seattle Children's Hospital, where our own Jane Goto has been an integral member of the DSD team. The highlight of our CME program appears to have been the panel of our own members. The panel lasted about an hour and a half, and many clinicians in attendance named it as an outstanding educational opportunity. Affected women and teens and teens' mothers talked about their own experiences, including the importance of compassionate and honest disclosure of diagnoses.

Next year our meeting will be in late June in Oklahoma City, arranged in conjunction with the SUCCEED Clinic. In addition to other programming, we are working on a support group for affected men, and we plan to offer dedicated space for men who support women affected by DSD.

In the meantime, we hope you will visit our new website. Visitors will notice we are featuring links for affected individuals in Japan and China; there has been a lack of organized support in those nations, but we now have members from those countries who are ready and able to do outreach.

The picture included with this post is from our Seattle conference, showing our members as we are—out about our DSD, and proud of ourselves and each other. We hope we will draw even more affected individuals and their families to our meeting next year!

Go to main blog page