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30 Years of Service and Advocacy - by Rosemary Morris

Hello, my name is Rosemary Starr Morris, and I was diagnosed with Turner syndrome (TS) in 1979 at the age of 17. I struggled a great deal in the first 10 years to accept my diagnosis, and then finally I got tired of not knowing anyone else with the same condition.

I was given the contact information to the Turner Syndrome Society of the United States (TSSUS) when it was headquartered in Minnesota by my genetics counselor. I called the number and spoke with Lynn who was the Executive Director at the time. She then sent me a list of everyone that the society had that was located in California. I put the list away for approximately a year and then pulled it out again.

I called an Eva who lived in San Francisco at the time, and we agreed to meet at the top of the Powell Street BART station in San Francisco, because she lived in that area very close to the station. Eva had wanted to start a support group in the SF Bay Area for TS; however, she did not want to do it alone. Our first meeting was held at Kaiser Permanente in Oakland and the rest is history.

We were chosen to be the host of the TSSUS National Turner Syndrome Conference in 1998 that was held here in San Francisco. I believe that there were approximately 400 to 500 people at that conference. Over the past 30 years, I have continued to advocate for others with TS, and have organized and promoted what were called TS Patient Family Education Days at Stanford Children's Hospital, Stanford, Valley Children's Hospital, Madera, Children's Hospital Los Angeles, Los Angeles, and at Sutter Children's Hospital, Sacramento.

I served on the TSSUS Board of Directors for approximately four years as the woman at large - director, and I learned the inner workings of the Society. I have learned a great deal from TS in general by both being the TSSUS California Group Leader and on the TSSUS Board of Directors. I am proud of the dedication I have shown for advocating for others with TS.

Through my advocacy, I have met many amazing doctors such as Ron Rosenfeld, Stanford Children's Hospital, Mitchell Geffner, Children's Hospital of Los Angeles, Nedim Cakan, Valley Children's Hospital, Madera, and many others throughout the years. I am truly blessed to count Ron, Mitch, and Nedim among my valued friends in TS. I will always treasure their friendship for years to come.

I have an 18-year-old adopted son named Andrew who was diagnosed with autism at around the age of two years. I have always said that I went from TS to autism. He is the light of my life and I love him to the moon and back. He has come so far with his diagnosis and continues to amaze me each and every day. He will be graduating this coming June from Armijo High School, and I could never be prouder. He has amazed me every step of the way and continues to.

My quote:

"The hardest part of having Turner syndrome is being so closed to normal that people do not understand."

HAPPY TURNER SYNDROME AWARENESS MONTH. I love and am truly blessed to be a member of the TS Community.


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