The Kids Are Coming--and They're in the News!

[Lisa Boylan]

As we all gear up for a week of epilepsy in D.C., I am so excited to meet a young group of advocates from all across the country. Kids Speak Up! (KSU) and our Public Policy Institute are our very successful, signature advocacy events. The participants have been garnering media attention prior to their arrival--because it is their stories that resonate with people and lawmakers. That is why they will go to Capitol Hill on March 29 and share what living with epilepsy is like to their representatives in Congress. I've seen one lawmaker leave a vote on the Senate floor and come listen to a young girl tell about the struggles of living with epilepsy. The kids speak and Congress does listen.

 

Each year is different, amazing and--most of all--inspiring. Philip Wu, a 16-year-old from Turlock, Ca., will come to Washington to tell legislators about how he experienced tonic-clonic seizures about once every hour. It got so bad he had to be home-schooled for his 7th grade year. Then he tried a different medication and, while he still experiences seziures, he is now a straight-A student. He is excited to come to Washington. In an article in the Modesto Bee, he says, "I have continuously prayed every night to God for 3 years that I may be chosen as an ambassador."

 

Jessica Waters, of Beaver Creek, Ohio, was diagnosed with epilepsy on her 11th birthday. In an article on her local Fox station, she said, "I have epilepsy, but it doesn't have me." Jessica did not let epilepsy hold her back. She took up dance classes and performs on the dance team at her middle school. Jessica was also crowned Miss Ohio Teen earlier this month, also reported on her local Fox station along with her story of epilepsy and upcoming trip to D.C.

 

Jonathan Ramirez, a 12-year-old boy from Chicago will also join the 45 other KSU ambassadors. In a story in Chicago Parent magazine, Jonathan spoke about his commitment to spreading the word about epilepsy. Jonathan and his mom, Gwen, are excited to come to D.C. because, as Gwen says, there is not enough awareness. (There's about to be!)

 

Other kids include Malina Richardson, a Native American cross-country runner who says running track has improved her condition. She wants to be a voice for her Native American community to encourage good health, nutirition and epilepsy awareness. Another participant, Kaylee Smith, is a straight-A student who has epilepsy and, tragically, lost her younger brother to epilepsy. Kaylee is the president of the junior varsity theater arts program at her school. She hoped the program would accept the Epilepsy Foundation as this year's class philanthropic project. She presented the story of her brother's loss and her own epilepsy and they unanimously selected her project to fund. She has also actively pursued other funding opportunities all to raise awareness so that no one has to experience a loss as difficult as the one her family sustained when her brother died.

 

It's all about awareness. This time it's the kids' turn to raise awareness on the Hill to increase funding for epilepsy awareness and put the condition on the forefront of Congress's priorities.

[Lisa Boylan]

Comment by MrsLinkgetter on March 29, 2011 at 1:43pm

Thank you for introducing us to the KSU Ambassadors! As many know KSU is dear to my heart. Sam went in 2002 for the first time and this is what introduced me to advocacy and the epilepsy foundation!! I became hooked on advocacy at that time and began to teach others about the importance of speaking up and speaking out! I have since gotten many others to head to Washington to join in the efforts! I taught them how to speak in an united voice for epilepsy! This is such an important event! One of the most magical parts is watching the kids, parents, and doctors joining together sharing stories. Bonds are formed and I know that communication continues for years past the event!! I have maintained many of the friendships formed at KSU!! Watching neurologists listening to children or parents talk with care in the non-clinical setting touched my heart in a very special way. We have had a very difficult road as many have had.

 

On Capital Hill Day, the kids and adults head out polished and dressed up so perfectly with training in presenting the message. Mostly they just tell their personal story. Seeing members of Congress and Health Legeslative Assistances truly listen and explain that it is important for us to come and speak to them warmed my heart the first year. The second, third, and fourth year I knew it was true when the same LA remembered me and my children. One LA would pay particular attention, not to the new people with me, but to my son's story or ask me, "How is Sam? How is your daughter? He remembered that new problems had occured. New seizure diagnosis for a second child. Sam was worsensing, The toll of epilepsy on families showed. Yes, he did listen to the other families with me, he also listed to the message we brought. He also ensured that his Senator's signed letter was first in line,hand carried to the correct office. He helped us later on when we had other problems. Advocacy works. Do they always listen? No. Do they always say YES? Not at all. This is why we need to bring more voices in united form!

 

Our voices matter and we will be remembered. Respectful communication. We can stand up, We can Speak up!