Raising Awareness for SUDEP
It takes grit, focus, and true resolve to run a marathon. Hours upon hours of training, in good weather and bad. The ability to dig deep, then deeper, and then even deeper to finish those 26.2 miles. And, for most, it takes an unending source of inspiration.
For Jennifer Sime of Decorah, Iowa – who ran her fourth Chicago Marathon to support the Danny Did Foundation October 2023 – that inspiration is her son, Brendan, who passed away at age 19 in November 2017 from Sudden Unexpected Death in Epilepsy (SUDEP). Each year, more than 1 in 1,000 people with epilepsy die from SUDEP; it is the leading cause of death in people with uncontrolled seizures.
“After I ran the New York City Marathon in 2005, I said, ‘never again,’” says Jennifer, a registered nurse case manager at Gundersen Health System in La Crosse, Wisconsin. “But I started following the social media of the Danny Did Foundation, which advances public awareness of SUDEP, and they were recruiting their team for the 2019 Chicago Marathon – I thought that doing it would be healing for me as I have always used running as an outlet.”
Within days of her joining Team Danny Did, the foundation’s president, Tom Stanton, reached out to Jennifer by phone to learn more about her story. “It was one of the most genuine, heartfelt conversations I have ever had about Brendan,” she recalls. “I constantly talk about that first encounter and what a pivotal moment that was, not only in my advocacy but also in my grief journey, to have someone understand it on many different levels – I knew right then that I wanted to be part of the foundation, to work to perhaps save someone else’s son or daughter.”
Today, four years later, Jennifer is, in fact, much more than “a part of” the Danny Did Foundation. She has raised thousands of dollars to support the organization’s mission by running the Chicago Marathon year after year. She has served on its board since 2021. She has given inspirational talks on its behalf, spreading the word about epilepsy and SUDEP and sharing Brendan’s story – most recently taking the stage at the foundation’s “Hearts and Hugs” gala in October 2023.
It’s a space Jennifer never dreamed she would occupy prior to November 28, 2017. That was the day Brendan passed away from a seizure while asleep in his room at Iowa State University – and the day his family (including Jennifer; her daughters, Josie, Mya, and Ivy; her husband, Todd; and Brendan’s father and stepmother, Perry and Meg Numedahl) were left struggling with the finality of their loss.
Diagnosed with epilepsy at age 10, after his fourth-grade teacher, Karen Van Der Maaten, noticed he was showing signs of the disorder in class, Brendan had, says Jennifer, been managing the condition well for years under the care of a neurologist and the watchful eyes of his family. A top student at Decorah High School, he was active in his church (Decorah Lutheran) and on the athletic field, participating in football and track all four years and, his senior year, qualifying for the state track meet as part of the 4×800 meter relay team. He also earned numerous academic honors. Brendan seemed, says Jennifer, “to be clicking on all cylinders” when he began classes as a mechanical engineering major at Iowa State University in the fall of 2017.
And while Brendan and his parents knew well that college would “bring on a whole other level of stress,” they were, despite all the doctors’ visits over all the years, unaware of SUDEP. “The goal was always getting his condition managed with the hope of going off medication,” says Jennifer. “No one ever emphasized how very serious this condition can be if you don’t do all the things you need to do to continue to manage it.”
In the years since Brendan’s death, Jennifer has channeled her grief into advocacy, raising awareness of the disorder and SUDEP both within and beyond the epilepsy community. Inspired by his ISU flag football team, who coined the term, she and his family and friends formed the “B Team,” which raises funds for nonprofits like the Epilepsy Foundation of Iowa (EFIA) while emphasizing the values that Brendan espoused during his life, including kindness, compassion, and hard work.
Beyond fundraising for EFIA, Jennifer also serves on its Community Engagement Board, and as the EFIA SUDEP Ambassador. Since 2019, she has traveled to the State Capitol in Des Moines to thank legislators for annual financial support of EFIA and to lobby for passage of the Seizure Safe Schools legislation, which would require school personnel to complete seizure-recognition and first aid training and require students with epilepsy to have a Seizure Action Plan on file, and/or require the administration of FDA-approved treatments in the school setting. Twenty-three other states have already passed this legislation; Jennifer continues to work to bring Iowa into the fold.
“We all have a personal story to share, and mine is that Brendan’s teacher was the one who recognized his epilepsy first,” says Jennifer. “If you can establish a connection, and make it personal, the room becomes so much smaller.” The legislation has cleared the House of Representatives almost unanimously for years but has faced hurdles in the Senate. Undeterred, Jennifer says she will keep on working to help secure the bill’s passage.
“One of my favorite parts of advocacy is bringing people to the cause because it really is about the cause and about the people who are impacted,” says Jennifer. “I am proud to be a voice to a kid who just wanted to be normal, who didn’t deserve this, and who does deserve to have his life story shared in a way that can help others now – I know Brendan would never want to be known as the boy with epilepsy but the boy who lived his life to the fullest despite it.”