Dear AXYS Community Member,
We accomplished so much this year.
We refreshed our website to assure the content is what parents, caregivers, and adults need. We asked each group: is this what you were looking for when you first had a diagnosis? What else would have helped? What do you need now? Thank you to all who gave their input. Visit genetic.org to see the new sections on mosaicism and XXXY. The text is now more family friendly, and each page offers more resources.
We were assisted by volunteer website communication experts so this project was accomplished at no cost to AXYS. Then, the doctors in the ACRC (AXYS Clinical and Research Consortium) checked our scientific accuracy and assured the content is up-to-date.
We now send our newsletter monthly. Many of you sent messages saying you enjoy learning from the Video of the Month and share the Paper of the Month with your doctors.
Support groups began to return to face-to-face meetings. Thanks to all who attended in Florida, New York, California and Texas. We also broadened our virtual support groups. We added a new group to support partners of those with XXY. In 2023, we will bring innovative in-person gatherings to bring us together to celebrate our strengths.
We are updating and expanding our continuing medical education (CME) course in partnership with Dr. Hooman Sadri, MD, PhD and Dr. Stuart Howards, MD from Wake Forest University. Please share genetic.org/cme with your healthcare providers.
Our efforts to add clinics for adults along with our amazing ACRC pediatric clinics are working; half of our 16 ACRC clinics care for adults! Dr. Brien Mehmet, PhD, MSc, RN joined the ACRC as our 9th clinical researcher.
ACRC members held an international research meeting in September. For the first time, they presented research on all X&Y variations. Also the conference included presentations from support groups, assuring the doctors hear our voice. This shows the strength of the wider X&Y variation community working together across the globe to advocate for all conditions.
We’re thrilled to announce the AXYS ACRC Clinic Visit Stipend program. This offers a $500 reimbursement for a non-research visit to an ACRC Clinic. AXYS has committed $20,000 for next year. We need your financial support to make this a permanent program.
In June 2023 we will hold our second AXYS Virtual Family Conference. Families and presenters from all over the world will share knowledge and create friendships. We will return to in person conferences when we are able to offer an affordable option for families.
With financial support from AXYS, Dr. Shanlee Davis at the eXtraordinarY Kids Clinic in Colorado has launched the GALAXY (Generating Advancements in Longitudinal Analysis in X&Y Chromosome Variations) Registry. This will allow researchers to study all X&Y variations in a cost effective manner. As a result more scientific papers will be published expanding knowledge for medical professionals. Our entire community can participate no matter which doctor provides your medical care. For details visit genetic.org/GALAXY.
We still have much to accomplish. If you have donated in the past, thank you. If you are able to make a first-time contribution, we welcome you to our family of supporters. Every donation helps us offer critical support and information just when people need it the most. We are asking for your continued support. We can’t do this without you.
The Board of Directors and I wish you a healthy, safe, and joyful holiday season.
Carol MeerschaertAXYS Executive Director