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...

Rachel | Living with ARVC

Rachel | Living with ARVC                                                     Phoenix, Arizona | Born January 1987   “I am forcing myself to take it easy—which is not easy.” Rachel grabs her tennis racket and heads onto the court. She savors the cool spring air,...

ARVC Awareness: Dawn’s Story

Can you tell me a little bit about your SADS journey?  I’ve always been very healthy and athletic, always involved in running or walking. When I was young, I ran track, cross country and participated in a lot of 5K’s and a few Tough Mudders as well as a half...