Metro Roundup: Epilepsy foundation celebrates 50th year

Many people may know Scott Stantis from his career as a political cartoonist for The Birmingham News and the Chicago Tribune.

But what most people don’t know is that he lost his brother, Marc, to epilepsy in 1986 when Marc was just 31 years old. Marc was the third of four boys, with Stantis being the baby of the family.

“Marc had epilepsy and development issues, and that makes you a different kind of person having a sibling like that,” Stantis said. “I had just gotten a job at the Memphis Commercial-Appeal and had been there for about a month when I got a phone call from my older brother that Marc had died. He had a seizure in his sleep and asphyxiated himself.”

Marc rarely had the type of seizures where he would collapse and convulse. Sometimes they were the type where he would zone out and you could tell he wasn’t there.

Stantis’s wife Jeanine was pregnant with their first child at the time and gave him the middle name Marc so his name would live on.

Stantis said the death of his brother was shocking, and he has since dedicated himself to being involved in the Epilepsy Foundation. For several years, he provided children with epilepsy the opportunity to attend camp with his reprint checks from his cartoons. He currently serves on the Epilepsy Foundation Alabama’s advisory board.

“The last thing he ever said to me face-to-face, as I was getting in the car on Christmas Day to leave to start my job in Memphis, he pulled me aside and said ‘I want you to know I’m really proud of you.’”

Stantis said that last moment with his brother taught him to always say “I love you” when he leaves his wife or children because “you don’t know if it will be the last time you may see them.”

Marc passed away several weeks later in February. Stantis said his brother was in a good place and that maybe it’s not such a tragedy to leave the world when things are going well. He really wanted Marc to meet his kids, but losing a sibling steals those moments away.

Stantis said having Marc as his brother helped him to learn compassion, and that while there are people with different skills, they are still amazing and wonderful people.

“One of my main goals in life is not just to help find a cure for epilepsy and facilitate social support for them, but also find out more about SUDEP (sudden unexpected death in epilepsy) and why it happens. I think about my brother everyday, and if I can make some kind of homage to him by doing this, I’m glad to do it.”

Stantis recently stepped back from his full-time role at the Chicago Tribune and moved back to Birmingham a year-and-a-half ago. Although he and his wife lived in Chicago for 10 years, they kept their home near Indian Valley in Shelby County and moved back into it.

He currently freelances for the Tribune doing two cartoons a week, has been writing the comic strip Prickly City since 2004  recently began working part-time at the Alabama Policy Institute as the public affairs officer.

Executive Director Sara Franklin began her role in September 2019 and is working with people who know the history of the foundation.

One in every 10 people will have a seizure, and Franklin said that epilepsy is more common than people realize.

“People don’t talk about epilepsy, and we are working to reduce the stigma of it,” Franklin said.

Franklin had her first seizure in August 2018. A 30-year-old new mom, her husband woke up to her convulsing in the bed and called 911. Franklin was taken to the ER. She had three more seizures between then and April 2019, but she found the right medicine and has been seizure-free since then.

She said she had to step away from her job at a PR firm. In Alabama, every time someone has a seizure, they can’t drive for six months.

“It affects people’s lives in so many ways, and we want people to know they’re not alone,” Franklin said. “We offer things like monthly support groups, the Walk to End Epilepsy and connect people to treatment resources and ultimately save lives.”

Franklin said anyone’s brain has the potential to seize, that seizures do not discriminate and that anyone can develop epilepsy. Although it is most common in children and senior adults, it can occur in those who have suffered a traumatic brain injury, in college students who are stressed or not getting enough sleep, or in veterans. Seizures are also common in infancy and when puberty begins.

SUDEP deaths are 1 in 1,000 people, and 1 in 50 people die with uncontrolled seizures. More common than Sudden Infant Death Syndrome (SIDS), SUDEP isn’t talked about much, and Franklin said there are ways to reduce the risk and hopes to raise awareness of it.

The foundation is celebrating its 50th anniversary in 2021. A livestreamed celebration is scheduled for Tuesday, Jan. 26. Franklin said she chose that night because the statistic of 1 in 26 people will develop epilepsy at some point in their lives. The 26-minute event will be presented on Twitch and later available on the foundation’s social media channels.

During the event, guests will hear from physicians from across the state, neurology teams, board members and clips of people sharing information about the 50-year history of Epilepsy Foundation Alabama.

“We want to celebrate the fact that we made it through this milestone,” Franklin said. “Even making it through the pandemic is quite a milestone. We want to thank people for their support over the past 50 years.”

Franklin said she also wants to emphasize the importance of people becoming seizure first-aid certified. A virtual program can be done online at epilepsy.com/firstaid. It includes a pretest, an hour long webinar and a post-test. It shows how to recognize different types of seizures, how to properly assist someone and when to call 911.

Garland Stansell serves as the advisory board chair for the Epilepsy Foundation Alabama. He has first-hand experience living with someone with epilepsy: his mother.

She began suffering seizures after falling from a tree and sustaining a head injury when she was about 11 years old. After much testing, she finally received an epilepsy diagnosis in her 20s and began taking medication.

He said one of his earliest memories was when he was about 4 years old and she had a severe seizure.

“I was not sure what it was, but I knew something was happening,” Stansell said. “Once she stopped seizing, I went into the bathroom, put her head in my lap and put a wet washcloth on her head. I can remember my younger brother being in the playpen and crying.”

Stansell’s dad worked a blue-collar job that required long hours, so growing up, he ended up being his mother’s main caregiver. Along with the seizures, the epilepsy caused other issues like depression and anxiety.

“I was more of her confidant and able to help her in being a sounding board to listen when she was having different types of struggles with the emotional part,” he said.

After years of going to a neurologist and taking medication, Stansell said, “for the most part her seizures were under control, and she had very few.”

After going through menopause and having a hysterectomy in her mid-50s, her seizures almost completely stopped. Stansell said she has been mostly seizure free for about 20 years now. Married for 61 years, she is now the caregiver to his father, who suffers from dementia.

“I’ve been involved for about 21 years with the Epilepsy Foundation Alabama and became involved as my mother’s seizures began to evade because I wanted to be able to give back.”

Stansell, who has worked as the chief communications officer at Children’s of Alabama for the past 26 years, said growing up with a parent with epilepsy gave him a different perspective. Prior to that job, he worked at Alabama Goodwill Industries and found early on in his professional career he wanted to do something that would make a difference in people’s lives.

“Early on you learn people are different, and some people have what others consider disabilities,” he said. “I think it does help you develop more compassion for people who are struggling.”

Funds raised during the 50th anniversary virtual event will go toward supporting Epilepsy Foundation Alabama efforts that include seizure first-aid virtual trainings and certifications, school personnel and school nurse seizure first-aid trainings in Alabama, monthly support groups, Epilepsy Foundation Kids Crew memberships and activities, the SUDEP Institute, summer camp scholarships, research and more.

People who have either been touched by Epilepsy Foundation Alabama or know about the history of the organization are encouraged to email their memories and photos to alabama@efa.org.

To register for the 50th anniversary event, visit epilepsyalabama.org/50th. There is no mandatory fee to register, but households are encouraged to donate $126 or more if they are able.