From the perspective of one of the ATS patients: "With the euphoria that came from this completely improbable and remarkable meeting also came a lot of relief: relief over getting answers about a condition which affects your child’s life so heavily; relief over hearing about what research is being done; or, for the sufferers like me, the relief of finally meeting in person somebody who experiences this cruelly rare genetic condition just like you. That was an experience I had never truly fathomed, but the happiness I got from simply being in the same room as other ATS kids (and adult) was immeasurable. For many, parent, sibling or sufferer, the biggest relief was being in the company of someone who, on a deep, automatic and unspoken level, could simply understand."
A Twist of Fate-ATS
The first-ever ATS conference was a success
August 18, 2015
This was a historic moment for all involved. Chive Charities and the members who donate feel honored to have been able to help make it happen.
Here is Dr. Fontenont, responsible for diagnosing Aiden with ATS. He is one of the leading experts in the field.
“It has been such an overwhelming time coming back home from conference. It was such an emotional experience, the entire conference. We were able to work with Arkansas Children’s Hospital to do research echoes and some data research. During the research echoes, we found three parents (carriers of ATS) who had life threatening issues with their aorta. So we literally saved 3 lives at the conference! It was so much work but I could not have pulled any of it off with out Chive Charities!”
