ARVC Awareness: Katherine’s Story

“This whole experience completely changed my perspective on life. I think now I am easier on myself, I lean on the people I love a little more, and I don’t stress about the trivial things anymore. I take it one day at a time, although living with ARVC is hard.”...

ARVC: Stories from the EL-PFDD

In June 2023, the SADS Foundation is bringing the ARVC patient community together for a first ever FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). This meeting gives the FDA and other key stakeholders — including researchers, biopharma...

Nelson | Living with ARVC

Nelson | Living with ARVC Tampa, FL | Born August 1971 “The problem is not dying. The problem is living with this damn disease.” The loud banging coming from the street was getting closer. Rounds of gunshots, RPG explosions, and the sounds of mass looting came...

Raising Awareness: Madison’s Story

Madison is one of only 60 people worldwide diagnosed with a rare PPA2 cardiac mutation. This drawing – inspired by her heart journey – is currently a finalist for the Google Doodle 2023 Scholarship, which would provide both Madison and SADS with funds – and help raise...

Brugada Awareness: Doug’s Story

Can you tell me a little bit about your SADS journey?  I have Brugada syndrome that was identified when I had Cardiac Arrest at home, then somehow came out of it. A few years before that I had passed out while wearing a Holter monitor. At first I thought I’d had a...