Tuesday, October 6, 2009


I am now pledging to change the face of epilepsy. As a result of the frustrations that I faced daily and the lack of information available, I have created a place–which I hope will become a community–where you can learn about epilepsy, share stories and ideas, and offer support to others facing this debilitating, often chaotic, disorder. Erin Leyden, Co-Founder & President of Epilepsy Outreach

I had the pleasure this week, of talking with Erin Leyden. Erin and her husband, Patrick, along with Patrick's sister, Anne Marie Clancy Co-Founded The American Epilepsy Outreach Foundation. (http://www.epilepsyoutreach.org). They were determined to help other families whose lives had been turned upside down by seizures and create a supportive place in which those same families could become educated about epilepsy. Their son Emmett's life was touched by epilepsy when he was 2 ½ years old. His story is beautifully documented on the organization's website. I was in tears viewing it. I was touched by the openness with which they shared their experiences. I am so grateful to have had the chance to talk with Erin and learn more about the Epilepsy Outreach Foundation.

The American Epilepsy Outreach Foundation “is committed to raising the public’s awareness of epilepsy through advocacy and education” as well as to provide support to family's whose lives have been impacted by epilepsy. They have done an excellent job of providing a vast amount of information on epilepsy through their website, sponsoring fundraising events (Annual Change the Face Race), providing access to professionals for answers to questions about epilepsy and providing resources to assist and support families facing lives with epileptic challenges. In fact, Epilepsy Outreach will send a Ketogenic Starter Kit to new Keto families upon request. The Starter Kit includes a digital scale, a general list of acceptable Keto foods, a binder, spatulas and some Keto friendly food samples. To request a Ketogenic Starter Kit, contact the Outreach Foundation from their website.

How can you get involved with Epilepsy Outreach? How can you help them educate the world about epilepsy? Go to their website, click on the “Get Involved” link at the top of the page and choose one of the many different avenues available to connect with this amazing foundation! You can enter your child's story, which like Erin's, could help other families that are searching for support. The website offers brochures and posters that will help in your effort to educate your family, neighbors and teachers. FACES (Friends Accepting Classmates with Epilepsy and Seizures) is also available through the website by request. It is a 45 minute presentation given to 5-8th graders, teachers and staff educating them on epilepsy and basic first aid for seizures. Please drop by the site, read up, educate yourself and get involved!

Most recently, Erin has been working diligently on their next fundraising opportunity for Epilepsy Outreach! On Thursday, November 5th, at The Providence in New York City, the Epilepsy Outreach Foundation and the Lennox Gastaut Syndrome Foundation will be hosting a Helmet's for Hope Gala!


If you're anywhere in the area, this Gala is a “must do!” The night will include a cocktail hour with hors d'oeuvres, and a sit down dinner. Celebrities and professional athletes will be in attendance as well as a fun auction which will include autographed helmets from professional sports teams. I can't think of a more beautiful evening or a better way to contribute to the Epilepsy Outreach cause. Make sure to stop by if you are close to NYC in November. (Wish I could be there! Erin - We need to set one of these events up on the West Coast!!)

Lastly, Erin wanted to get the word out about connecting your local epilepsy support groups with the Foundations website. Please contact Epilepsy Outreach and give them the information for your local epilepsy support group. A link will be added on the Outreach website that will enable others to find and attend your local group!

Our passion is real, our eyes are open and we are willing to change the face of epilepsy. Journey with us on this most worthy cause.” Anne Marie Clancy