Support AXYS with your generous annual gift

Another year has gone by, and it’s the perfect time to share the incredible progress and achievements we’ve made to support individuals and families with X and Y chromosome variations. All the work we do is supported by our community, and we thank you for your past donations.

As a member of the community, I have been involved with the XXYY Project and AXYS for more than 25 years. My journey began in 1997, when my son was diagnosed as 48, XXYY. I had no idea what this was, and as you can imagine, there was very little information. And what was out there was not great. Thankfully, through KS&A (now AXYS), I found other XXYY parents looking for answers. Through this organization and the dedication of one mom and the research of our very own Dr. T, XXYY Syndrome was established. We now had some answers but this was just the beginning…

Virtual Conference Success: Our second virtual conference surpassed all expectations. The wealth of knowledge shared by both professionals and those with lived experience offered support, knowledge, and actionable suggestions. Friendships were created and parents had information to take back to school to support their children.

I even hosted a meeting on Confabulation!

To increase access to support on demand, recordings of the conference sessions are posted on our very own YouTube channel. The 200 videos there offer a wealth of information for our community.

In-person Gatherings: From San Francisco to Maryland and everywhere in between, volunteers from the AXYS community organized gatherings. These gatherings reunite old friends and foster new connections.

My XXYY son and I went to the gathering in Cincinnati; it was the first in-person meet up in 4 years! I always say, the reason I go is that for a few days anyway, Brandon is typical when he is with his friends/peers.

Diversity in Leadership: Our AXYS board is historically the most diverse we’ve ever had, including three individuals with an X or Y chromosome variation.

Expanding Clinical Support: In 2023 we added two new ACRC clinics: Lurie Children’s Hospital of Chicago and the MIND Institute in Sacramento, helping to ensure individuals and families receive expert care for X and Y chromosome variations.

AXYS and the XXYY Project launched an ACRC Clinic Visit Stipend supporting the use of these clinics by reimbursing up to $500 in travel and other costs, helping families utilize the clinics. AXYS has also helped families by providing numerous educational resources.

Looking ahead to 2024, we need your support to reach these goals:

• Increasing In-Person Gatherings: The mutual support and common thread amongst our families and individuals is invaluable. We will support gatherings by condition and by geography to foster meaningful connections and to share experiences.
• Support Life-Changing Research: AXYS will continue to support research geared toward making a difference in the lives of those with X and Y chromosome variations. AXYS and the XXYY Project financially support the GALAXY registry so that clinical researchers can have a comprehensive set of data that encourages research that our community needs.

I serve on the GALAXY Registry Steering Committee. Our monthly meetings with Dr. Shanlee Davis, doctors from the ACRC, as well as community leaders with a condition, assure this registry will serve our community.

Now, it’s your turn:

Have you donated in the past?

Have you never donated?

Have you always supported us?

Will you help us, so others, like me, can find accurate information?

Thanks to all of you and no matter your past involvement, we would love for you to be part of our future. Your contribution is essential to our ability to provide the support, resources, and experience that define AXYS. Please consider a donation, no matter how large or small, to help us continue our important work. We appreciate your continued involvement, and look forward to another year of supporting the X and Y chromosome variation community.

Sincerely,

Gail Decker

AXYS Board Secretary