Living with ARVC | Julia’s Story

Julia | Living with ARVC       Santa Rosa, CA | Born January 1992 “This is something I’ve had to deal with every single day for more than two years. I have had to mitigate. Life has really had to change. I came out of this a completely different person.” The Sonoma...

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...

LQTS Awareness: Charlie’s Story

I’ve known about my Long QT type 1 diagnosis for as long as I can remember. My mom, only after having my first sibling, Calvin, prematurely and running extra health tests, found out our genetic line had it. She then passed down the trait to her next two children,...

LQTS Awareness: Piper’s Story

Can you tell us a little bit about your SADS journey – from diagnosis to where you are now?  I’ve always played competitive sports my whole life. When I was 14, during a preseason, I had a Sudden Cardiac Arrest. I got to the ER right away and got...