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Girl Power Goes to Washington for National Epilepsy Walk

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Meet two young advocates who are experienced seizure fighters

Cassandra Villanella, a high school sophomore from Long Valley, New Jersey, and Zayda Priebe, a fifth grader from Chatfield, Minnesota, live thousands of miles apart. Yet, they are close in ways that they do not realize: They know what it’s like to live with a seizure disorder—and to be seizure free. What’s more, these two girls have become dedicated advocates for others with epilepsy.

So much so, that on April 11th, they both traveled with their families to the nation’s capital for the National Walk for Epilepsy. They were awarded a sponsorship by Upsher-Smith Laboratories, Inc. to attend the walk.

Zayda, who said she got some “pretty good pictures of the monuments” as they were walking, had a message for others who have epilepsy. “Anybody out there who has epilepsy, I just want you to know, you’re not alone,” she said. “Although it feels like you’re alone, you’re actually not. We’re in this together.”

As it has in the past 8 years, the walk drew thousands who came out in support of over 2 million Americans who live with epilepsy. The National Walk for Epilepsy raises funds to continue the fight to find a cure, educate, and overcome the challenges and the stigma often associated with epilepsy.

Seizures began in early childhood

Cassandra, 16, was diagnosed with long-lasting seizures when she was 18 months old. In the second grade, she began having partial seizures, sometimes as many as 15 in a single day. Fortunately, the partial seizures were cured through surgery. Though she still takes medication to control the long-lasting seizures, Cassandra is now largely seizure free.

Zayda, 11, experienced her first seizure the summer before kindergarten, from complications associated with pertussis (whooping cough). Fortunately for Zayda, she has healed and she has been seizure free for 3 years and medication free for almost 2 years.

Since her surgery, Cassandra has taken part in her high school color guard and winter cheerleading. Zayda plays basketball, volleyball, and swims with a friend—something she could not have done without being supervised by an adult a few years ago.

Cassandra’s mother, Melissa, added that hope played a major part in their lives and journey. “I think there’s hope for everybody,” she said. Her husband, Robert, said his message to others was simply to keep trying. “We went through so many medications and different doctors,” he said.

Becoming epilepsy advocates in their communities

Cassandra and Zayda have become strong advocates for epilepsy in their hometowns, which is how they wound up being sponsored to attend the National Walk for Epilepsy.

Cassandra and her family recently attended the Epilepsy Foundation of New Jersey’s “Paint the Pony Purple” event, held at the Stone Pony in Asbury Park, a rock club made famous by Bruce Springsteen. Cassandra’s activism rubbed off on her younger brother, Michael, who was so inspired by his sister that he decided to make a video for a school project called, “Move for Epilepsy Challenge.” The video called out facts about epilepsy and challenged viewers to show their support for people impacted by seizures, by doing jumping jacks, squats, and push-ups—and donating to the Epilepsy Foundation of New Jersey.

Meanwhile, Zayda and her family have been participating in their own brand of advocacy. For the past several years, they’ve taken part in the Epilepsy Foundation of Minnesota’s Stroll for Epilepsy. Her team, made up of extended family and friends, dressed in matching T-shirts and called themselves “Z-Power.” Zayda and her family, including her mother, Amanda, her father, Ryan, and her younger sister, Maizee, brought that Minnesota Z-Power to the National Walk for Epilepsy.

The dedication and courage of these girls is inspiring. And the National Walk for Epilepsy is a great way to join in the effort to raise awareness about epilepsy. Check here for some ideas on how you can get involved!

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David Stefanoni (Upsher-Smith); Cassandra Villanella; Linda McCabe; Chris Norton; Elycia Norton; Samantha Norton; Robert Villanella, Michael Villanella; Melissa Villanella; Carol Weeklund (Upsher-Smith)
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Scott Hussey (Upsher-Smith); Ryan Priebe; Zayda Priebe; Amanda Priebe; Maizee Priebe; Rusty Field (Upsher-Smith)

April 20, 2015 | Categories: General

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