I am excited to have celebrated my 5th anniversary as the Executive Director of AXYS on October 8th, marking five years of incredible accomplishments for our organization. I am extremely proud of what we have achieved together during this time, and want to take a moment to highlight some of our key milestones:
Financial: I meticulously examined every expense, forged relationships with cost effective vendors, chose less expensive yet feature rich software platforms, and improved our practices, resulting in annual savings of $25,000 for AXYS.
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- I revamped our financial practices, adding checks and balances to assure accurate accounting. We switched banks allowing us to earn interest on our cash reserves and receive cashback benefits on our credit card.
- A fund was created that, with continued dedication and hard work, will eventually serve as an endowment, ensuring financial stability for AXYS during challenging times.
- Since the beginning of the century, AXYS ended the year net negative 10 times. AXYS has not seen a single year with negative net revenue during my tenure.
Expanded Outreach: We expanded our reach by adding dedicated website sections for Mosaic and XXXY variations. Additionally, we welcomed our first board member representing the XXXY community and offered support groups for Mosaic and XXXY during the 2023 virtual conference.
Diversity and Inclusivity: We prioritized board member diversity, now including BIPOC and LGBTQ+ board members, as well as 3 adults with an X or Y variation. We have also introduced support groups and conference sessions for these diverse groups, along with valuable research on gender, sexuality, and other critical topics.
Adaptability: We successfully navigated the challenges posed by the pandemic by pivoting from in-person to virtual programming, ensuring our services continued to reach those who need them. We created innovative chats, a Family Game Night, a week-long AXYS Summer Camp and a virtual conference.
ACRC Expansion: The AXYS Clinical and Research Consortium (ACRC) doubled from 9 clinics when I started to 18 today; half of these clinics serve adults.
We added the clinical researchers to our consortium. They do not see patients as a typical clinic would—they dedicate their professional lives to helping us understand more about X and Y variations.
GALAXY Registry: AXYS supports the GALAXY Registry, a project that has long been on the wish list. AXYS offers both financial support and oversight as AXYS community members serve on the steering committee.
Stewardship and Development: Recognizing the need to secure substantial gifts, I initiated a focused effort on stewardship and development. This effort bore fruit in July, when AXYS received two major gifts, making it a record-breaking month for us.
Cost-Efficient Website Revamp: We revamped our website at zero additional cost, a remarkable achievement considering the $10,000 price tag of our last redesign. Thanks to all of the community members from every variation who contributed their input on dozens of Zoom calls, surveys, and messages, assuring the website content is up-to-date and meets the needs of each part of our community.
Kudos to Richard Frith for all of the work he did on the update, while still serving as communications manager, tech lead and all-around support for AXYS. Rick is amazing!
I extend my heartfelt appreciation to our dedicated board members, support group leaders, Helpline volunteers, and everyone who selflessly contributes to support the AXYS community. I eagerly anticipate the journey ahead, and with your unwavering support, we will continue to make strides toward our mission.
Our work remains unfinished until every individual with an extra X or Y chromosome is aware of their condition, every medical professional comprehends X and Y variations and the unique care needs, every teacher provides the best education our community deserves, and no one faces discrimination or negativity because of their X or Y variation.
Thank you for being part of this remarkable journey, and here’s to many more years of progress and success.
