Atlanta Music Guide was given the opportunity to speak with Shannon Kiss, the wife of Wayne Sawyer, who sadly and unexpectedly passed away in his sleep in September 2009 from Long QT Syndrome. For the past three years, Shannon has helped raise awareness about Long QT Syndrome and has worked religiously with the SADS (Sudden Arrhythmia Death Syndromes) Foundation to raise funding in order to help others become more knowledgeable about the syndrome and more protected against it.
On June 1, Shannon, friends and family are celebrating Wayne’s life and hosting a musical event at Smith’s Olde Bar to help raise awareness and funding for Sudden Arrhythmia Death Syndromes like Long QT. There will be great music, great friends and one heck of a party! There will also be a silent auction and raffles ALL NIGHT LONG!
Shannon filled us in on all the details of the event. Check it out!
Can you tell us more about SADS and what encouraged you to give so much of your time to this cause?
On September 29, 2009 my husband passed away in his sleep due to an undiagnosed genetic heart condition called Long QT Syndrome. We didn’t know he had it, we knew nothing about it and we had never heard about it. We were quick to learn that our daughter who had just turned three had it, as well as, other family members. There were quite a few opportunities for the medical community to have diagnosed it, but it’s not really in the forefront of the mind to look for. I became involved with the SADS (Sudden Adult Death Syndrome) Foundation because awareness is hugely important. The thing that I want everybody to remember is that it’s very simple, if they hear of anyone who has a cardiac incident, such as fainting or getting dizzy during exercise or upon being startled, at a young age (meaning 40 years or under) or has a family history, then they need to have a conversation with their doctor about Long QT Syndrome. Those are the only symptoms, other than death. It is not curable, but there is a great amount of protection that can be provided through medication, avoiding a long list of drugs, and making some lifestyle changes.
Tell us about these fundraisers and how you got started.
I started doing these fundraisers as a way to honor Wayne’s memory while trying to help others avoid a similar fate. They started very small and they’ve grown into a pretty big production with great support from Smith’s Olde Bar, the Fox Brothers, friends, family and the community who loved Wayne and supports us. Wayne was a founding crew member for Widespread Panic and he was one of their first roadies and their guitar tech for eleven years. We’ve had a lot of support from the music community in Atlanta and Athens. A lot of the artists [playing at the event] have been a huge support.
Besides these fundraisers, how do you spread awareness?
Through Facebook, with social media being so powerful, we’ve reached over 5,000 people. I’m almost positive that 95% if not more of those people did not know about SADS beforehand.
These fundraising events have grown tremendously over the past three years. Why do you think that is?
This is the biggest and the best year yet because of the music. Jerry Joseph with Jeff Crosby and the Refugees are coming from Portland, OR. Jerry has supported us all three years, as has Danny Hutchens of Bloodkin. They went out of their way to help launch the live music portion of this event when I had no idea what I was doing and really just needed friends to be present, patient and understanding with me. We’ve got a lot of love from Athens. It’s a really great time. People travel for it. People support it. It’s really people just coming together to celebrate life, to celebrate Wayne and make a difference.
What is the difference between General Admission and VIP for this event?
General admission is upstairs. Betsy Franck is playing her only set in VIP. Fox Bros BBQ is catering. There’s a complimentary keg of Fat Tire beer. The VIP ticket comes with an event poster. It also comes with five raffle tickets that will work for a special VIP raffle as well as being included in the general raffle upstairs.
These events and the support from your family, friends and community must make you feel many emotions. What is the whole process like for you?
I usually spend five full months working on it. It’s a really positive way for me to channel my energy. I feel a lot of support and love. I keep Wayne’s memory alive. It’s been amazing and healing in that way. The night of the event it is really emotional at some moments, but it’s really positive to be around all that love and great energy. I crash and burn the day after and it’s like feeling the loss all over again. It’s a roller coaster.
You and your daughter, Lily, are moving to Colorado in June. Do you plan on continuing to host these events in Georgia every year?
I really want to continue to have it at Smith’s every year. It’s really important to me that Lily grows up with philanthropy and working for a cause. I don’t want her to be focused on her father’s death and worried that that is going to happen to her. This is Wayne’s town, his mom is here, his sister is here, we have so many friends here. That’s the plan and I’d like to make that a reality.
If someone cannot attend the event, can they still help?
We do have a PayPal account set up for donations for people who can’t attend. The SADS Foundation has their largest fundraiser called Climb to Conquer SADS. Families sponsor a mountain climber who takes flags up Mt. Rainier and tell stories in honor of the individual they are climbing for. I thought that was a really rad idea and it really resonated with me. On the May 31st, the day before the event, we are having our own Climb to Conquer SADS at Stone Mountain and we’re going to have the banner and people sign his flag. We’ll climb in his honor and that way Lily can participate and our friends too.
To donate to this cause, please use the PayPal account [email protected].
For tickets please click on the link below.