
Amanda Van Horn's Fundraiser

Help Goldie and I earn our way to the AXYS 2025 Community Conference in Atlanta!
Your support will benefit the Association for X and Y Chromosome Variations, and in exchange they'll cover our conference registration and lodging.
In the first trimester of my pregnancy with Goldie in 2017, I found out about her diagnosis of Trisomy X, a sex chromosome aneuploidy in which a person has three X chromosomes in all of their cells (as opposed to the usual two). It affects 1 in 1000 girls and can cause a wide array of symptoms, from subtle ones like speech delay, learning disabilities, mood disorders and hypotonia, to more serious ones: seizures, ovarian failure, kidney and heart defects. Never having heard of this condition, I was incredibly frightened and concerned about what this meant for her future, and for that of our family.
AXYS was a huge support for us in those early days, providing a wealth of information about Trisomy X and other X & Y chromosome variations, connecting me with other families that share the diagnosis, and opening the door for Goldie's participation in multiple clinical research studies that allow us to meet with the world's top specialists in the field as well as offer valuable insight for future generations of children and adults with her diagnosis. We have been traveling to the Extraordinary Kids Clinic in Denver, Colorado since Goldie was a newborn, and she absolutely loves these trips!
The AXYS conference was last held in-person in 2019, and attending was an incredible experience. It provides an opportunity for us to learn the most up-to-date information from medical professionals and leading researchers on X&Y chromosome variations as well as meeting others in the X&Y community from all around the world.
Once we reach our fundraising goal, AXYS will waive our registration fees and cover two nights of hotel costs, a huge savings for a single parent like myself. If you are able, I humbly ask that you consider supporting Goldie and I by making a donation so I can attend this amazing event. All donations go directly to AXYS, which is a registered 501(c)(3) charity. We are so grateful for this opportunity.
All our love,
Amanda & Goldie