by Erinsads | May 21, 2022 | Blog
Can you tell me a little bit about your ARVC journey – from diagnosis to where you are today? I had my first symptoms years before my event. I did a VO2 test once, while I was doing triathlons, and a strange heart rate result came back – but because I was young and...
by Erinsads | May 10, 2022 | Blog
In June 2023, the SADS Foundation brought the ARVC patient community together for a first ever FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). This meeting gave the FDA and other key stakeholders — including researchers, biopharma companies,...
by Erinsads | May 6, 2022 | Blog
When Joelle was 12, she passed out in church – and testing revealed that the culprit was ARVC. And it progressed quickly – a year after diagnosis, at 13, Joelle got an ICD to help regulate the “electrical chaos” in her heart. Joelle had been a competitive figure...
by Erinsads | Apr 25, 2022 | Blog
Can you tell me a little bit about your ARVC journey – from diagnosis to where you are today? I had my first symptom of ARVC at 16 years old when I passed out. My mom called the doctor and he said I was a young, healthy, athletic woman who must have had low blood...
by Erinsads | Apr 18, 2022 | Blog
Can you tell me a little bit about your family’s ARVC story? The first time our family heard of ARVC was in 2018 when my son, Greg – after the first of five Sudden Cardiac Arrests he’d experience in his lifetime – received the diagnosis. Seventeen years earlier, my...
