by Erinsads | May 15, 2023 | Blog
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...
by Erinsads | May 10, 2023 | Blog
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,...
by Erinsads | Apr 25, 2023 | Blog
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...
by Erinsads | Apr 14, 2023 | Blog
There’s new, exciting, and groundbreaking research on the horizon for SADS conditions. At the SADS Foundation, we’re working with companies who are almost ready to recruit participants for first-of-their-kind clinical trials for these new therapies. Make sure to fill...
by Erinsads | Mar 23, 2023 | Blog
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...
by Erinsads | Mar 16, 2023 | Blog
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,...
