Walk the Talk: Why I'm Going to Register for the Walk TODAY

[Lisa Boylan]

Today was a great day for epilepsy awareness and for getting people energized about the 6th annual National Walk for Epilepsy! Our day at the National Office began with a visit from our passionate and committed Walk Council co-chair Matt Miller.

Matt has two sons with epilepsy and he has created some fantastic videos starring his young sons. They are experts in karate--and call themselves the Epileptic Ninja Brothers. Matt is completely devoted to raising awareness about epilepsy and getting the word out. He gave a presenation at our all-staff meeting and not only did he remind us very clearly about why what we do every day is so important, he provided an emotional and very real story about his boys and why they want to make a difference.

Check out their latest video (so cute!!) and you'll be ready to register for the Walk!

Then another incredibly inspiring story aired today on the Today Show with Kathie Lee and Hoda. Kaitlyn Slomski, who used to work for the Epilepsy Foundation Western/Central PA, hit her head in 7th and developed epilepsy following the injury. She had seizures for 8 hours the first time and 6 hours the second time. She is now celebrating 7 years seizure-free and plans to continue working at the Epilepsy Foundation Chicago.

She told her amazing story on the show and let everyone in America know she is a Walk Captain. Watch her video here.

Now I'm off to register at www.WalkforEpilepsy.org. See YOU in Washington, D.C. on Saturday, March 31!

[Lisa Boylan]

Hi Marlene--thanks for your message. I will let Kaitlyn know you wrote and forward your information to her. --Lisa

[Lisa Boylan]

Hi Southie--are you visiting www.WalkforEpilepsy.org? You have to re-register every year. Please call 866-4EF-WALK with your concerns. Thanks!

[Southie]

I am registered since last year and can't do a danged thing on that new site because it considers me as "not a participant" when I've been involved every year; and in addition - I have manually emailed individuals since last year when I signed up (as I posted it once it came aboard) that people are being redirected to other individuals which are causing them to retreat and withdraw from sponsoring or making a donation when they are wanting to sponsor me.

I already sent an email last December (2011) about this and no response, It is NOW February 3rd and still no response so this is my 3rd email again and this time around added EFOF along with my emails.

:(

[Marlene Emmett]

dearest Kaitlyn:
I just happen to have not been able to sleep at 2:00AM Friday when channel 4 repeated your
story on the Today show, I was blown away by it.
I'm also a Epileptic. have been one since age 6.
I was diagnosed as having petitMAL & absence seizures ~mine didn't last as long as your first one did~ I was put on a load of medications till we found the correct one at age 15.
That's when I threw my first GrandMAL,my then neurologist suggested that I be put on
a then experimental drug from France they were having great success with.
That drug was TEGRETOL and that was 1969.
My doctor added the Tegretol to Valium 30MG & Dexedrine 165MG 3times a day.
So I was taking 800mg of tegretol.
That stopped the GrandMALS.
In 1977 the doctor stopped the Dexedrine cold turkey.
Today I'm on 800mg of Tegretol XR - 400mg 2 X a day.
No other epilepsy medication, and I've not had a GrandMAL since 1986.
Kaitlyn, one of the things that struck me is that you want to change "the face of Epilepsy".
Well, so do I and alot of other people I know what to do the same thing.
We have conversations about doing this~but our question is how do we do it????
I was thinking something along the lines of a PSA telling people what Epilepsy is and isn't.
can you get back to me? My email is: [e-mail]
and my telephone number is 1-718-746-0459.
I would love to talk to you about how we can do this.

Thank You, Marlene Emmett.