Saturday, December 03, 2016

Massachusetts Area States Trisomy X Support Group

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November 5,

Third Massachusetts Area States Trisomy X Support Group Meeting

“Taking it to the MaXXX”

What a wonderful time we had sharing each other’s stories, reconnecting and meeting new families! Here is a recap of events that occurred:

  • 19 families expressed interest in coming

  • 11 families attended our meeting, traveling from all over MA, NH, and NY

  • 7 girls with Trisomy X ranging from 8 years old to 28 years old

  • 3 Girls with Trisomy X had never met another girl with Trisomy X! (So heartwarming to see!)

  • Sharron Close, a pediatric nurse practitioner and scientist at Emory University, and her students, Cathy and Janette, have a special clinical interest and research interest in X & Y variations. They were able to call in to the meeting and help answer questions and gathered ideas from families regarding future research areas.

The highlight of the meeting was seeing the girls with Trisomy X meet other girls with Trisomy X for the first time. It was very heart warming to see. It is this very reason I enjoy so much bringing these amazing girls and their families together.

I want to thank all the families who brought food items to share. A huge thank-you to Andrea Wilczynski for her hard work developing and maintaining the Facebook site for our girls with Trisomy X. I’m so glad Andrea won the free raffle which was Virginia Isaacs (Ginnie) Cover’s book Living with Klinefelter Syndrome, Trisomy X and 47,XYY. Special thanks to Andrea W, Brian, Eileen Curran, Jim Zuis and Kayla, who supplied crafts and kids games. Many thanks to Kim Smith-Daly and Erin Frith for maintaining the Facebook site for Trisomy X and all members involved in AXYS for all the support and education they provide our families.

A very special thank-you to my daughter Jessica Burke for reaching out to all the new girls/ladies with Trisomy X in our support group. Jessica, you are truly amazing!

Thank you all for sharing your stories and coming together to help support and increase awareness of Trisomy X. We are looking forward to our next meeting. I am truly grateful to have the opportunity to bring all these amazing girls and families together!

Warmly,

Joanne & Greg Burke and our daughter, Jessica Burke (17 years old Trisomy X), siblings Michael, Christine and Jamie Burke



Contact Joanne Burke: Jomamaburke@comcast.net


2016 Awareness Proclamation signed by Massachusetts Governor Charlie Baker                        :


 














2016 Awareness Proclamation signed by Massachusetts Governor Charlie Baker



  
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