California, there we were


 

 by Cindy Stone

 

 

 

For many of us, the weeks leading up to the Tenth Annual AISSG-USA National Meeting in beautiful Palo Alto were filled with anticipation. I found myself humming the old chestnut:

California here I come, right back where I started from.
Where bowers of flowers bloom in the sun… etc.

So open up them golden gates, California here I come.

Well, we orchids did bloom in that sunshine from August 19-21, 2005 at the Sheraton Resort in northern California thanks to the incredible work of Jan Johnson.

Jan had set the table very well for all of us to gather, share, learn, laugh and care for ourselves and each other.  The enormous amount of “woman-power” Jan personally gave to this organization is extraordinary.  We all owe her our gratitude for making the “10th annual meeting” such a huge success.  Thank you Jan!

The meeting was attended by some 50 AIS adults, along with a few parents, teens and physicians. A welcome reception held poolside got us started, and the 60-70’s August weather was perfect for dining under the stars at the MacArthur Park Restaurant (no, they didn’t leave the cake out in the rain), a nearby historic restaurant that hosted some 30 of us fellow orchids. It was the first opportunity for several of the attendees to get to know each other, eat some good food and of course drink some excellent California wines!

Saturday was a full day of informative speakers and storytelling. The day began with introductions and greetings from the board.  Soon after, Dr. Charmian Quigley, Senior Clinical Research Physician for Lilly Research Laboratories, gave a presentation on "The ABCs of AIS."  Dr. Quigley relayed the history of AIS which included the discovery of DNA in 1953 and molecular defects in AIS in the 1990s.  Then, in detail, she spoke of the medical aspects of AIS including the definition and clinical features of AIS.  Dr. Quigley's presentation was most informative to "newbies," giving them much needed background on the intricacies and nuances of AIS.  We thank Dr. Quigley for taking the time to travel to the west coast and shed light on AIS and give wonderful information to all.

After Dr. Quigley's presentation, our host Jan Johnson, surprised the group with a gift basket for each of us filled with gifts, candies, information, and treats!  For months Jan had worked with businesses to secure donations for all attendees – and she surprised us all!

The afternoon event on the Saturday schedule was storytelling.  Adults and parents split into two separate groups and took turns telling their AIS stories.  It was a very emotional exercise for many.  Our personal experiences with secrecy, mis-information and feelings of isolation came to the surface.  However, it was very therapeutic and bonding experience.  (The photo above was taken after the story-telling and sharing session.)

Attendees asked that evening activities be opened up for people to make their own plans.  Many participants went into the center of Palo Alto, others made the trek into San Francisco.  The day wrapped with enjoyable late night chats between AIS adults and parents rounding out the evening.

Sunday started with a breakfast and a presentation by Dr. Richard Auchus, Assistant Professor, Endocrinology at UT Southwestern Medical Center in Dallas.  Dr. Auchus gave information about the Rare Genetic Steroid Disorders Consortium and explored the clinical aspects of AIS.  Many attendees had questions about HRT and the consortium (along with other topics), so Dr. Auchus’s information proved most useful.

After a lunch, attendees had much pampering and fun activities before people started splitting off to head back home.  There were many tearful goodbyes.  In all, it was a weekend of soaking up much needed information on AIS, bonding with fellow AISers and parents, and making friendships that will last a lifetime.


   Cindy Stone

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