How does a SADS condition impact you? Please tell us about your own personal experience or how it has impacted someone you are close to.
On 9/29/09, an undiagnosed case of Long QT took the life of my husband at 40 years old, exactly 1 month after our daughter's 3rd birthday. We have since learned that she & other family members have the condition as well.

Why do you volunteer for the SADS Foundation?
The SADS Foundation has been a tremendous source of information and support. They have helped me manage my daughter's health, alleviate the stress I have for her, cope with my grief and channel my energy in healing and positive ways. It is crucial that people become aware of conditions like Long QT and encourage anyone with the symptoms or family history of early cardiac arrest to protect others from suffering the same tragic loss that my daughter & I have endured. Knowledge literally translates into lives saved in this instance, and I am determined to do my part in that endeavor. Another unexpected benefit to the work I have done is finding an immeasurable amount of love & support from the people in my life, many of whom I've only grown to know through this experience. I've lost a lot but I've also gained a great deal in the process, and working together towards such an important goal in my husband's honor has been incredibly healing. I want my daughter to grow up learning the importance of charitable work, and involving her in our annual event held in her "Poppi's" memory is the very best way I can think of to accomplish that goal.

Please tell us a little about what kind of volunteer activities you do for the SADS Foundation. (i.e. participation in SADS awareness campaigns, responding to advocacy action alerts, attending/organizing SADS events in your community, etc.)
I hold an annual benefit in sponsorship of a climber in the Climb to Conquer SADS. This event has grown in size significantly each year. We started with an auction & information table in a corner of a restaurant, and we have moved to a popular venue with live music. I use social media heavily to promote the Foundation, SADS/Long QT awareness, as well as my event. I issue press releases and contact as many individuals & media outlets as possible. My community raised over $23,000 in the first 2 events, and I expect to add significantly to that number this June. I have also worked to get SADS awareness and cardiac incident preparedness in the Atlanta Public school system, starting with my daughter's school & in partnership with a program at Children's Healthcare of Atlanta. Unfortunately, I haven't had the response I was hoping for, but I have raised some awareness with the school staff.

What is your favorite part about volunteering for the SADS Foundation?
My favorite part is the response I get from the people who loved my husband, who love my daughter and me, and who want to help save lives. I am fortunate to have many incredible people in my life, and their willingness to give of themselves in support of this cause is almost overwhelming. It has helped me get thru the loss in a very real way, something that continues to be a struggle for both Lily & I. However, between Laura & the Foundation's support and the tremendous love of the people in our lives, we're getting by with joyful things to look forward to. In the words of beloved songwriter and guitar player, Michael Houser... Where there is Love there is Hope.

Do you have any advice or final thoughts for others who might be interested in getting more involved with the SADS Foundation?
Yes! Do it! Get involved. Find something you enjoy and build an event around it. It is imperative that people hear, read, learn & talk about these conditions. Even if you can't hold an event, you can post articles on your social media pages. People will see it. Some of them will read it & share it. Some of those people will remember it, and then some will talk about it. Eventually, an individual that YOU reach will act on it and encourage someone to get testing, which will allow them to be protected. YOU will have saved a life.

While I am determined that my daughter not lose 2 parents, and I therefore present as positive a picture as I'm able -- it is not OK. There's nothing about this situation that is OK. It has not gotten easier, it is not in the past, nor is it a challenge I've worked through. The fact is that no matter how positive a face I put on for the world, I cry every day. My daughter cries more today than she ever did in the first 2 years after losing her father. There is nothing about this situation that is OK or acceptable to me. I refuse to live in the past, and I refuse to let my daughter suffer the loss of 2 parents. But, if I did not have the responsibility of another little person's life, my existence & goals would be very different. I admit this to you, because it is important to me that those who have suffered this kind of loss get the acknowledgement that they deserve. Just because there are things we can do to try to help others in the face of our loss, it doesn't diminish that loss in any way. Nor does partial protection make our loved ones safe enough. Just because someone say's "Do it! Get involved!", it doesn't mean that it is any easier to get out of bed each morning or live a life you never, ever imagined day after day after sometimes excrutiatingly lonely day. Just because there is a greater good that must be served, it doesn't mean that your loss & your experience & your pain are any less severe than they were a day, a month or 3 years ago. You are going thru hell, and you are not alone. We have a lifetime of challenge in this regard. However, I firmly believe that we are all given experience because there is much to gain, share & teach beyond the immediate lesson we observe. And, my wish for all enduring this kind of loss and challenge is that they open their hearts to find the vast amount of support and love that is available to them beyond anything they ever realized they had before. In that love, there is hope and light and healing and a reason to keep moving forward. I am so sorry for you all in these brutal circumstances, but you have been given such challenge because You Are Great and You Are Loved.