AXYS has a number of affiliated support groups. Support groups are facilitated by volunteers who schedule the programs and often arrange for speakers on topics of interest to individuals and families affected by X and Y variations. These groups offer the opportunity to share experiences with others and to learn about resources that they have found valuable. Some of our groups are affiliated with AXYS Clinic and Research Consortium hospitals, and they meet in those facilities. Other groups meet in libraries, medical centers, or churches.
National Support Groups
Our support group helps families who have been newly diagnosed, toddlers, kids, teens and adults living with X and Y variations. We currently offer education workshops with our local school districts, as well as community and education outreach. We also offer assistance with IE’s and Regional Center advocacy, provide support groups for all ages, hold an annual picnic, and support research through fundraising activities.
Jacob Flores, Educational Workshops and Outreach
November 5, 2016
“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:
- Nineteen families expressed interest in coming
- Eleven families attended our meeting, traveling from all over MA, NH, and NY
- Seven girls with Trisomy X ranging from 8 years old to 28 years old
- Three girls with Trisomy X had never met another girl with the condition!
- Sharron Close, a pediatric nurse practitioner and scientist at Emory University, and her students, Cathy and Janette, have a special clinical and research interest in X & Y variations. They were able to call in to the meeting and help answer questions and gather ideas from families regarding future research areas.
The highlight of the meeting was seeing the girls with Trisomy X meet their peers for the first time. It was very heartwarming 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 […]