by kymera_editor | Apr 14, 2022 | Advocacy, ARVC, Rare Disease, Research
How did you get involved with the SADS Foundation? I was at the University of Colorado in late 1999, finishing my residency in internal medicine. In my third year, I was a genetics and cell biology major. I designed a rotation where I could go out to genetic clinics –...
by kymera_editor | Jul 6, 2021 | Connecting with others, Genetic Testing, Rare Disease, Research
The Cappello family Can you tell me a little bit about your family’s SADS journey? This all started in 1980, on the night of Easter Sunday. My family spent a full day with my oldest brother, and then he went to bed, and died suddenly in his sleep. The autopsy didn’t...
by kymera_editor | Jun 21, 2019 | Long QT Syndrome, Research, Sports/Exercise
Calling LIVE-LQTS Research Study Participants! If you are enrolled in the LIVE-LQTS study, we would love to hear from you and thank you for participating. SADS Foundation is creating a web page to recognize members involved in this three-year study. We...
by kymera_editor | Jun 15, 2018 | Connecting with others, CPVT, HCM, ICD, Long QT Syndrome, Research, Sports/Exercise, Sudden Cardiac Arrest, Timothy Syndrome, Uncategorized
Seeing the doctor is always stressful. It’s even more so when you’re from out of state (like me) or even out of country. It can be very overwhelming. I admin a group and we get a lot of questions from people asking what it’s like, where to stay,...
by kymera_editor | Dec 20, 2017 | ICD, Online Patient Communities, Research
As a fast growing online patient support community with 5700+ members, my Facebook group “Living with an ICD” is attracting the attention of researchers. More and more, they discover the potential of social media to reach patients for medical studies. Unfortunately,...
by kymera_editor | Oct 18, 2017 | Research
“This possibly represents the greatest discovery of the century. With this technology, we could end suffering and disease for billions of people.” Stephen Heitner, M.D., a cardiologist at OHSU in Portland, Oregon, was a member of the research team who showed it is...
