Epilepsy affects 50 million people worldwide and more than 2.7 million people in the U.S.; half of all patients are children. I’ve had the honor to learn more about epilepsy and the dangers involved.
I became friends with a woman who started a foundation, Epilepsy Warriors, on Facebook. Susan Noble isn’t a parent but if you ask her she’ll say she has a lot of children. She cares for children with epilepsy and their families. Ms. Noble provides support when families need a shoulder to lean on, and a place to meet others going through similar situations.
A longtime Facebook group member and now Epilepsy Warriors board member, Lisa Printen of Wilmette has a son with epilepsy. Trey, whom she affectionately nicknamed Bear when he was a newborn “was at Children’s Hospital for six weeks after he was born,” shares Ms. Printen. “He would arch his back and not respond to any of us, but when someone gave him a bright orange bear he would react to the bear and we just started calling him Bear.”
Bear would smile at the bear and when his family held the bear in front of their faces he would smile at them too. Bear is the youngest of three with an older brother and sister. His older siblings have witnessed seizures and some pretty terrifying moments that can happen when a child is having a seizure “If he’s having a seizure I would have to wake his brother or sister and have them watch the clock,” says Ms. Printen, who says time is everything while a child is experiencing a seizure.
The Epilepsy Warriors Foundation, Fighting Seizures One Child At a Time is hosting a gala to help raise money to fight epilepsy. The inaugural dinner and gala is this Saturday, April 20th in Chicago.
“We are hosting a Gala to shine a light on this devastating disease, raising money to help provide research, education and awareness,” explains Ms. Noble, founder of Epilepsy Warriors Foundation whose mantra while helping people with epilepsy is “Disability is Not Inability.” Epilepsy Warriors is made up of parents, caregivers of children, teens, young adults and adults who suffer from seizures and have been diagnosed with epilepsy, Dravets syndrome and LGS. “Join us as we continue to build Bridges within our community and work to cross the Bridge of Hope,” says Ms. Noble.
On Saturday, April 20th, from 6-10:30PM, the Bridge of Hope Gala Dinner will celebrate families battling epilepsy along with the children who are currently fighting epilepsy. The much-anticipated guest speaker is former Chicago Bear’s Linebacker Joey LaRocque. Mr. LaRocque is the President of the Guardian Helmets Company and will address the crowd about his work with children, and life as a former NFL player.
Mr. LaRocque is honored to be part of the Epilepsy Warriors Gala. “They don’t just talk about doing things, they get it done at the street level,” he observes. “No ego, passionate, easy to work with, ‘can do.’ They are focused on where the greatest needs for families and patients are and act to solve the problem. They are wonderfully collaborative and all about the results needed. We love our collaboration because we feel time and money spent all go directly to making a significant difference.”
The event takes place at the Holiday Inn Mart Plaza (350 West Mart Center Drive); tickets cost $150 each and include dinner.
Special guest appearances by Chicago Bears players as well as video recorded messages given by Minnesota Gophers Coach Jerry Kill and CBS 2 Chicago News Anchor Rob Johnson. Ms Noble and other area families who are impacted, along with sports fans, are expected to attend. Anyone interested in helping a wonderful cause can send a donation, because it’s more than just the seizures it’s making everyday life for the families a little easier as well.
The Bridge of Hope Gala Fundraiser will benefit the Epilepsy Warriors Foundation, Changing the Face of Beauty, University of Chicago Comer Children’s Hospital and Northwestern Memorial Hospital. Funds for the Epilepsy Warriors Foundation are going towards an Epilepsy Resource Center to be located at the University of Chicago Comer Children’s Hospital and to the Health Learning Center at Northwestern Memorial Hospital to have more resources for Epilepsy families and patients.