We promised that our 2019 AXYS Family Conference would be the best one yet and we achieved that goal. Nearly 400 participants from as far away as Brazil and The Netherlands gained knowledge and understanding in Atlanta. You could feel the strong sense of community and watch friendships blossom. Here are some comments from those who attended in their own words:
“The people my daughter and I met were amazing.”
“A real sense of community was present at this conference.”
“The camaraderie with other parents was invaluable. Seeing our son mingle with the other guys so comfortably. The bowling, pool, and billiards were a hit!”
“This conference has changed our lives, and in return our son’s…AXYS is a family I am proud to have, my admiration of the doctors is off the charts!!!”
“I had a WONDERFUL experience at the conference. I learned so much, and my cup is full of knowledge that I am excited to share. I’m already looking forward to the next conference. Thank you to all the people in the background who got things together. I know it’s a job. Thank you so much.”
From an exhibitor: “I wanted to thank you for producing a flawless event where researchers and clinicians could share our findings with the families and other professionals. The event felt very well organized and we felt very well taken care of in terms of food and drink, along with comfortable places to talk with families and among ourselves. Both formal and impromptu discussions about our research with families who have participated in the past, are about to participate in the near future, or are now considering participating thanks to these opportunities, were truly the highlight of the conference.”
AXYS offered live webcasting for the first time. From as far away as Cyprus, 35 families were able to participate from their homes, watching sessions as they happened and submitting questions for the speakers. These sessions were recorded and are available on our YouTube channel.
To share knowledge with those who could not join us and to serve as a review for those in attendance the slide decks and the posters are available on our website. We also have slide decks and recordings from past conferences that remain relevant and offer practical knowledge. Visit https://genetic.org/about/conference-mtrls/.
Everyone at AXYS offers deep gratitude to all who learned from our amazing speakers, enjoyed bowling in Wisteria Lanes, gained new friends, participated in group and family portraits, met researchers, and joined support groups. Over 90% reported the conference met or exceeded their expectations and over 80% said they learned what they were hoping to learn.
Numerous aspects of this event were taken from the suggestions offered after the 2017 conference including: lunch choices, conference t-shirts, having a place for teens and adults to hang out and play cards or board games, having a session with awareness advocates, special ‘retreat’ sessions for parents of infants and toddlers and another retreat on transitioning to adulthood. Most session topics came from our community including: special education, testosterone replacement, fertility, siblings and mental health. Our thanks to all who offered more great suggestions that we will use to plan the next conference.
More from attendees in their own words:
“My son is not alone… I am not alone and most of all, it was NOT MY FAULT! I have felt so guilty about my son being diagnosed with xxy and always thought I had done something to cause this!”
“I had a chance to speak with families/caretakers of other XXYY guys and realized that so many of them are going through the same things that our family is going through. It’s nice to know that you are not alone.”
“I got so much out of the interaction with other KS men and their family members. I shared a lot with them and learned a lot from them”
“Networking was huge. Also great for my young adult son to meet others and meet some great role models.”
“The most valuable part of the conference for me was meeting and interacting with the other Trisomy X families, especially the teens. I loved them all.”
“Our first conference… day one…what we have learned and the amazing people we have met…there are just no words to express the love and respect 😊…in just one day, we have gained more information, and had things explained to us by the EXPERTS in AXYS that our doctors couldn’t in 11 years!!…And on top of the brilliant minds….each and every Doctor and the entire AXYS family was more caring than the next!!!!!…the information we received today will take us days to digest …lol ….we have learned things today….that our own doctors are misinformed about!!!…This conference will make a difference not just in my sons life ….but in every one of his doctors lives from this day forward ….THANK YOU”
“Not enough words to describe the feeling of satisfaction, friendships formed, knowledge gained, great speakers, good food, amazing Emory Conference Center, and so much more… Thank you Gary Glissman, Carol Meerschaert, and everyone from AXYS and elsewhere who worked so hard to make this Conference such a success! Grateful, hopeful, optimistic and ready to fight harder through this journey. Stronger together as we move forward to break barriers for X and Y Variations!”