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
Brian was a junior and on the dean’s honor list at the University of Wisconsin-Madison, studying biomedical engineering and computer science. He truly loved his college experience and formed an amazing second family away from home. We are comforted knowing he was the...
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 22, 2022 | Blog
Can you tell me a little bit about your family’s SADS journey – from diagnosis to where you are today? Our journey starts with my husband’s daughter, who was having cardiac symptoms. The doctors didn’t know what was going on, so they did genetic testing, and found out...
