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Can you tell me a little bit about your family’s SADS journey?

Our son was seven years old when he cardiac arrested. We went to go wake him up for school and we found him dead in bed, and we did CPR. He was in a coma, and had hypothermia therapy, and then recovered. He has what we now know is Long QT Syndrome Type 8. Since then, our objective has been to help families in need and continue to raise awareness. He’s been successful, he’s 20 years old now and doing well.

Why do you support the SADS Foundation, and why is it important to you?

When this happened to us, we didn’t have any support, or know anybody around us who had what our son had. It was very hard for us to identify with other families. We didn’t have any resources to help us with the ongoing medical questions, or to know whether our other son was affected. It took three years to get genetic testing to find out what was actually happening to our son.

I looked online and started researching, and I found the SADS Foundation. From there, we started going over education and talking to others who had similar incidents. We found that connection, and knew we wanted to support others who may be going through what we did –
and be able to help them find resources so they could feel comfortable and have others to connect to.

We started a support group, where we assisted families who were going through the same thing. From there, we morphed it into helping them with getting CPR trained and certified. We started an AED loaner program – we loan them out to families who are waiting for their own.

We also decided we wanted all of our school districts to be heart-safe schools, so we trained 6,000 kids in CPR, and now we consult with other school districts on how they can get all their students trained.

What advice or tips would you give to someone running a Facebook Fundraiser?

It’s important to put your personal story out, and what the money’s being used for. Every post, I put something like, “Your $15 donation just went to assist a family member with getting the resources to access genetic testing,” or “Your money just gave a family the resources to find a second opinion – like Dr. Ackerman, who saved our family.” I show what SADS does for people – it’s not just education and a website. They bring families together, they connect families, they have research that they’re conducting and doctors who will see you – and that means a lot to those who are donating.

Keep on top of it, and keep letting everybody know why it’s important and how SADS has helped benefit you. Tell them what their money’s used for, so they know how it’s helping families.