There is no need for me to say that this has been a year unlike any we’ve ever seen. It has been a difficult time in many ways. To those of you who have lost a loved one, may I express my deepest condolences for your loss. I also want to offer my sympathies to those who have lost a job, business, or home. To those who feel especially isolated with social distancing and other restrictions due to COVID 19: know that AXYS is here for you.
During these times where everything can feel demanding, I often reflect on the time I spend working with AXYS. As you probably know, AXYS has only 2 paid employees – the rest of our accomplishments come from the great support of volunteers, and the generous donations we receive.
I became involved with AXYS two years after my daughter, who has Trisomy X, was born. In the seven years since I was asked to “just help moderate the Facebook group,” I’ve served on the board, spoken with countless families, attended and presented at conferences, and am now the Chair. My work with AXYS is important to me – not just because my daughter has a chromosomal variation, but because the people AXYS supports are like a family to me. Especially in times like now, the sense of community and camaraderie is reassuring.
Despite the disappointment of not meeting and working with so many of you face to face, work at AXYS has continued. Just as we’ve all done, AXYS focused on what was still possible this year.
I feel that this year was transformative for AXYS as we grow and expand our ability to support those with X&Y variations. As we move into 2021, AXYS is coordinating our first virtual conference. We hope that this format allows more accessibility for those whose situations don’t typically allow them to come in person. We’ll continue to expand the ACRC. We will be creating new CME courses to educate medical professionals in many fields and educate them about all X&Y variations. We are continuing to create content to deliver educational webinars. We will continue providing support groups, and hope to host more social activities. We cannot do this without your help.
We thank you for your ongoing support that allows us to live our mission to help individuals with one or more extra X and/or Y chromosomes and their families to lead fuller, more productive lives.
Please consider donating to support AXYS as we continue our work.
With gratitude,
Erin Frith
AXYS Board Chair