by Erinsads | Sep 6, 2023 | Blog
About twenty years ago my older sister had an episode that almost took her life. Through this, she discovered she had a genetic disorder they called Long QT. At the time it was very foreign to doctors as well as us. Nobody had ever heard of this. Matter of fact, the...
by sadsfoundation | Jul 25, 2023 | Blog
by Deirdre R. Let her fly, they say. I want to. She will be fine, they say. I want to believe that too. I wake up sometimes in a panic and know which thoughts are breaking through the surface, forcing me awake. Will we make it in time? Will her device work as it...
by sadsfoundation | 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 sadsfoundation | 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 sadsfoundation | 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,...
