Dear AXYS Community Member,
In the face of another uniquely challenging year, we are thankful that you have done so much to help AXYS. We are asking for your continued support.
We have so much to celebrate.
Thanks to your input, our 2021 AXYS Virtual Family Conference was the largest ever. Although I’ll admit that I missed giving hugs to some of my best friends (who I met through our amazing X&Y variation community,) there were so many opportunities presented to us in the virtual format. Since nobody had to travel, we were able to gather nearly 500 people from 15 different countries. We offered 75 separate sessions focusing on a larger variety of content than ever before.
In partnership with Wake Forest University and a generous grant from the Kosloski Family Foundation, AXYS developed and launched a CME course, “Klinefelter Syndrome in Adults,” to offer healthcare providers guidance on identifying and managing X&Y variations. The grant also supported publicizing the course, allowing us to reach out to thousands of physicians and general practitioners.
The doctors and researchers in the AXYS Clinical and Research Consortium (ACRC) are planning an international research meeting in March 2022. For the first time, they will present research on all X&Y variations. This shows the strength of the wider X&Y variation community working together to advocate research for all conditions.
We continued and broadened our virtual support group meetings to include more local support, as well as expanding our groups to include underrepresented minority populations. We are excited about the possibility of having even more support groups return to face to face meetings.
So many members of our community have celebrations to share, too. Our community members celebrated graduations, new degrees, and marriages. Our Facebook groups are full of pictures and videos of toddlers learning to walk, happy faces on the first days of school, beaming smiles with caps and gowns, and so many other celebrations of our lives’ big and small moments.
Like so many of you, I found AXYS during a time of need. My child, now 10, was diagnosed prenatally. I was so glad that AXYS was there to give us the information that was available at the time. AXYS and its community members have helped shape the life of my child - resources for speech and occupational therapists, for urologists, for educators, as well as providing a support network for my child to meet people “just like them.” I was moved to tears when my child met another child with the same genetic variation, and it was possible because of the support AXYS provides.
I see now how AXYS has grown, both in the breadth of information available and in our reach to help others - and I ask you to help us continue in this mission. At its core, AXYS will always be a support organization for people and families in the X&Y chromosome variation community.
If you have donated in the past, I thank you. If you are able to make a first-time contribution, I welcome you to our family of supporters. Every donation helps us offer critical support and information just when people need it the most. We can’t do this without you.
Wishing you a healthy, safe, and joyful holiday season,
Erin Frith
AXYS Board Chair