When Michael Gomoll’s son Joey succumbed to Dravet (pronounced Dra-vay) syndrome he established The Joseph Gomoll Foundation to honor his son, and began preparing for the release of the Joey's Song project. Music was the centerpiece of Joey’s life so as a way to raise awareness the Foundation released a series of CDs featuring rare and unreleased songs from leading recording acts from around the world.

One of the leading supporters in the Joey's Song project from the very beginning has been Steve Wynn.and the Replacements – actually invented the American indie rock scene of the 1980s. He has been prominently featured in Rolling Stone, Mojo, Uncut, Entertainment Weekly, People, The Los Angeles Times, New York Times and countless other publications all over the world.

I took a few minutes to talk with Michael Gomoll about the Joey's Song project and Steve's involvement. Mike told me, "I wrote to Steve directly because I am a fan [of his] and Joey’s story hit home with him. I have only found a couple artists with a more direct tie to seizure disorders, most are just moved by our story. But really, we reached out to Steve because he is a music legend and were thrilled when Steve said yes."

What is Dravet Syndrome?

Dravet syndrome is sometimes referred to as severe myoclonic epilepsy of infancy (SMEI). It appears during the first year of life with frequent febrile seizures – fever-related seizures that, by definition, are rare beyond age 5. Children with Dravet syndrome typically experience poor development of language and motor skills, hyperactivity, and difficulty relating Seizures in Dravet syndrome are difficult to control, but can be reduced by anticonvulsant drugs. A ketogenic diet, high in fats and low in carbohydrates, can also help. For more on the Ketogenic Diet and how it is being applied read the story from the New York Times called Epilepsy's Big Fat Miracle or visit the Charlie Foundation.

As children with Dravet syndrome get older, their decline in cognitive function stabilizes, and in many, it improves slightly. However, most teenagers with Dravet syndrome are dependent.

What research is being done?

Study of the genetics associated with Dravet Syndrome and related disorders, is being conducted through NINDS and is expected to lead to the development of effective therapies.

For more information on Dravet's Syndrome:
http://www.idea-league.org/home
http://www.ice-epilepsy.org/dravet-syndrome
http://www.dravetfoundation.org/

For more information on Joey’s Song
http://joeyssong.wordpress.com
http://joeyssong.org

Jessica Keenan Smith, founder of Living Well With Epilepsy, is an author, blogger, and an
expert in niche marketing. Jessica has lived with epilepsy for more than 25 years and Living
Well has become resource to the more than 50 million people worldwide affected by epilepsy.

Jessica’s writing can also be found on Feministing.com, SheWrites.com, Exhalezine.com and
GoodDaysBadDays.net among other news outlets. She is an active member of the Society of
Children's Book Writers and Illustrators (SCBWI) and her work includes essays, articles, blog
posts and picture books. In addition, she speaks on living with epilepsy, making the most of
social media, and other topics.