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Volunteer Week Spotlight: Carl Barnes

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 –...

Susan Cappello: A Genetic Journey

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...

SADS Spotlight Tisha

by kymera_editor | Jan 30, 2020 | Advocacy, Brugada Syndrome, Connecting with others, Heart Hero, ICD, Parenting, Rare Disease, SADS Spotlight, Sports/Exercise

Name: Tisha M. Age: 36 y/o Which SADS condition do you have? Brugada Syndrome When were you diagnosed? 12/27/19 How are you treated? (Beta blocker, ICD, etc.) ICD How/when were you diagnosed? I went to Urgent Care on 12/27/19 with complaints...

“I Had To Do Something”: An Interview with Rare Disease Advocate Courtney Waller

by kymera_editor | Feb 28, 2019 | Advocacy, Rare Disease, Timothy Syndrome

February 28th is Rare Disease Day. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. While all SADS conditions are considered rare diseases, we want to focus on...

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