In 2003, Congress formally recognized November as Epilepsy Awareness Month. There are dozens of epilepsy-focused nonprofit organizations across the country, including 50 chapters of the Epilepsy Foundation, and many others worldwide. Every November I’m uplifted by the stirring stories I find about people dedicating their time and hearts to raise money for epilepsy awareness/research activities. Only a third of the way into the month, and there are already dozens of happenings posted online, with many more to come. Look for the identifying purple swag—ribbons, tee shirts, and buttons—Epilepsy Warriors don for their events. I always use my November blog to showcase inspiring Epilepsy Warriors from across the country.
Kim Hardy was diagnosed with epilepsy at age ten and had uncontrollable seizures for years. After decades of frustration and misunderstanding about her diagnosis, she was inspired to establish the Hardy Handz Foundation in 2017. Based in Columbia, South Carolina, the Foundation is a faith-based non-profit that provides education, advocacy, and support to people with epilepsy with an emphasis on the African American community. After years of trying different medications and alternative therapies, Ms. Hardy has been seizure-free since 2020. Her experience inspired her to increase awareness about epilepsy by writing a children’s book about it.
Terri Pajares is a 55-year-old woman from Metairie, Louisiana. A mother to four children, she began having drug-resistant seizures during her early twenties. In 2020, she underwent a temporal lobectomy where the neurosurgeon removed the seizure-triggering section of brain, which was on the left side. When she began having seizures two-years post-surgery, the neurosurgeons implanted a responsive neurostimulation device, or RNS on the right side of her head. An RNS detects abnormal brainwave activity before the seizure starts and stops it by emitting small bursts of stimulation. Since that second surgical intervention, Ms. Pajares has been seizure-free. Ms. Pajares’s life-transforming experience inspired her to establish Epilepsy Awareness of America, so others with epilepsy would know they’re not alone. Last weekend they sponsored their fourth annual fundraising walk, cosponsored by multiple local businesses. Funds raised go toward helping people with epilepsy cover medical expenses and epilepsy research.
Channing Seideman is a 30-year-old woman from Ohio, who was diagnosed with epilepsy at age nine. She followed her passion for horseback riding, despite her doctor’s assertion that epilepsy made the pastime too dangerous. Ms. Channing felt a cure for epilepsy couldn’t come quickly enough, but she knew this required funding. Motivated by years of uncontrollable drug-resistant seizures, Ms. Channing took a grant writing class, and established a fundraising page for CURE Epilepsy, a nonprofit dedicated to finding a cure for epilepsy through patient-focused research. Ms. Channing established a fundraising page on CURE Epilepsy’s site (https://give.cureepilepsy.org/fundraiser/4018994). To date, she’s raised $40,500 for them.
Although we’ve never met, I feel a special kinship with all three of these Epilepsy Warriors. Ms. Pajares and I both required two neurosurgical interventions to get our seizures under control. Like Ms. Seideman, I also defied convention, and rode my bicycle
, prior to my brain surgeries, despite the risks. And just as Ms. Hardy used her writing skills to publish The Adventures of Kimmee and Wallee, a children’s book about her seizure response dog, I am publishing Seizing Control later this month, a memoir about my own experience with epilepsy.
We’re all on quests, putting ourselves and our stories out there, to elevate awareness about epilepsy. It’s a condition that often scares people, partly because of the millennia worth of stigma attached to it. With the forthcoming publication of my book, I’m proud to join the Epilepsy Warriors’ ranks.
Happy Epilepsy Awareness Month. Please keep spreading the word.