June 1st, Ileen and I will again walk a STEPS FOR A CURE event with TEAM ZOE to express our love and support for our sweet granddaughter 3 1/2 year old Zoe, our son Owen, and daughter-in-law Erin. We invite you to join us in the fundraiser.

As many of you know, Zoe developed terrifyingly severe and prolonged seizures at 6 months of age and was diagnosed with the genetic condition, Dravet syndrome. Even with over 8 doses of medication every day, Zoe can experience scores of seizures in a year. Like the 200 children in the U.S. born annually with this condition, she endures lifelong cognitive and mobility challenges. One in eight children with Dravet die suddenly without warning before adulthood.

Along with so many others, our family benefits from improvements in diagnosis and treatment.  Progress now means a better life for Zoe and the thousands of kids like her in the future.

Because of the work of the Dravet Syndrome Foundation and others, we are moving forward. Six months ago, Zoe received a test dose of a genetic therapy injected directly into the ventricles of her brain to evaluate its safety. So far, the treatment appears safe, and we remain hopeful that higher therapeutic doses will modify the disease in the future. 

We aim to raise over $15,000 for the Dravet Syndrome Foundation to fund research and support families burdened with the daily demands and isolation of this diagnosis.  Caregivers desperately need resources to endure the physical and emotional toll of this disease.

If you are moved - and able - to support Zoe and so many others we gratefully welcome you to donate, join us in Bothell, or forward this email.

From the TEAM ZOE campaign, our family, and the Dravet community we thank you for your support!

Bill Kirshner and Ileen O’Leary