The Kids Are Here!

[Lisa Boylan]

Our fantastic advocacy events, Kids Speak Up! and the Public Policy Institute, kicked off last night after an amazing day on the Mall for the 5th annual National Walk for Epilepsy. We have over 200 participants--affiliates, volunteers, parents, and over 45 kids representing 31 states. Tomorrow the kids will take their stories to Capitol Hill to let Congress know what life with epilepsy is like. Epilepsy Foundation board member Ryan Dillon, a former Hill staffer, told the kids, "You are the living example of what epilepsy is. You live it, you know it, you know what a seizure is." 

 

The kids and their parents will also deliver the Epilepsy Foundation's advocacy goals: to urge all members of Congress to support the RAISE (Raising Awareness and Insight into Seizures and Epilepsy) Act of 2011. The RAISE Act seeks to build awareness of epilepsy through a national campaign to increase an understanding of epilepsy and seizures in the workplace, schools and communities. By helping the general public understand what epilepsy is, people with epilepsy will have en easier time accessing emergency care, employment and an education. They will also ask for continued federal funding to support ongoing research that will lead to a cure.

 

Connor Doran and his mother, Amy, who were so inspiring at the National Walk only hours earlier, delighted the crowd when they told them they would teach them to build their own indoor kites last night. Epilepsy Foundation Board Chair Joyce Bender introduced Connor and praised him for his turn as a finalist on America's Got Talent. Connor took the mike from Joyce and clarified, to a delighted audience: "You do not have to be on TV to speak up for epilepsy. Anybody can do it. You are doing it right now just by being here."

 

Everyone loved it. (Including me).

 

Amy Doran said, "I know there are a lot of parents here tonight that deal with what I deal with every day and I know it's a tough road. I know that even though our kids are struggling, we're struggling too." I'm sure that resonated with the parents in the audience. Amy said, "What I've learned through this whole trip is that I'm not alone. I thought I was. I never realized how much help there is."

 

Awareness has many facets. It's obviously one of our main priorities. We want to raise awareness about epilepsy to the general public, but the events we are hosting this week also bring awareness about something else to people with epilepsy and their families, friends and caregivers, which is: You are not alone. Other people are out there who are experiencing what you are experiencing. It's easy for all of us to assume everyone else's life is perfect (or nearly perfect) but it isn't until we really start to engage and listen to what other people are experiencing that we can understand we really aren't alone. There is help, there are resources, there are other people who understand.

 

A friend of mine with epilepsy at the Walk said, it's not enough to just talk about epilepsy--you have to show up. Thousands showed up for the Walk and now we have over 200 advocates here to take the message directly to Congress. Joyce Bender told the kids that when they go talk to their representatives they need to say: "I have epilepsy and this is why I want you to help us find a cure."

 

Read a little more about the kids that are here in my previous blog post.

[Lisa Boylan]

Hey Bryan--that would be great! I think you would really enjoy it. The kids will  this year, which is really exciting. Looking forward to seeing you in DC!

[bryan farley]

Hope I can stay for this year's event. Would love to work with the kids and help document the event.

see you soon Lisa!