In the summer of 2009, I was a recent graduate from art school, a waitress in a pub, and an intern at a museum. Life was full of promise and possibility and the usual anxieties associated with being a young person trying to find their place in this world. Where would life take me?
Then one morning, instead of waking up, I had a sudden cardiac arrest (SCA) due to previously undiagnosed Long QT Syndrome. My entire life changed.
One of the first resources for information and support my family was directed to was the SADS Foundation. My family, see. Not me. I wasn’t capable of very much at all for a very long time.
As I recovered, I sought out information and a community of people with similar situations. I dived into the world of online patient communities and advocacy. As the years passed, I got more and more immersed in this world.
With every opportunity to have a voice or make a contribution as a patient, I have felt humbled and honored and sometimes frustrated, because it is such a rare thing for patients to be invited into the conversations about healthcare.
In the 9 years since my SCA, I have made lots of connections and worked with many organizations, but the one closest to my heart (pun definitely intended) is the SADS Foundation.
It is with great honor and humility that I have accepted a position as the communications and engagement coordinator.
I am excited about many things and look forward to helping SADS with ongoing efforts to increase support of families, create more resources, make the annual SADS Conference even better, etc. But above all, I am excited about providing a stage where the hardest, most important stories can be told.
Sharing my story has been a transformative and empowering experience. Now it is time for me to take a seat, and help YOUR voices to be heard.
The support and encouragement of the SADS community has been an essential part of preparing me for taking on this role. Words can’t express my gratitude to the all the individuals, communities, and organizations that have helped me get here.
I hope my new position will provide me the opportunity to give back to all of you that have been with me on this long and sometimes challenging journey.
Now off to refill my coffee and get back to work!
Communications and Engagement Coordinator, SADS Foundation