CPVT Awareness: Madalyn’s Story

On December 21, 2022 I was playing tag with my sisters and neighbors when I collapsed in my neighbor’s yard. Thankfully my friends ran for help after my youngest sister found me unresponsive and blue in the face. 911 was called and I was taken to the hospital where I...

CPR and AED Awareness: Matt’s Story

Matt Clark is alive today because of the quick actions of his coworkers – at 40,000 feet in the air. Matt, who was an airline pilot at the time, had no previous medical issues or symptoms of a heart condition before his Sudden Cardiac Arrest (SCA) in 2020. “There was...

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...