Merkatoris pledges $1 million toward epilepsy research
By Heather Graves
GREEN BAY – Feb. 24, 2013, started like any other day for now 58-year-old Green Bay resident Sue Merkatoris, preparing for an afternoon meeting in Milwaukee.
“I was in Milwaukee with a friend,” she said. “I was down there for business, but the meeting wasn’t until later in the day, so we were kind of sitting there like, ‘What should we do today?’”
In the moments that followed, Merkatoris said her life changed forever.
“All of a sudden, I had something come over me,” she said. “I couldn’t talk. I could see this person, and he said to me ‘Are you OK?’ And I tried shaking my head no, because I wasn’t. I knew I wasn’t.”
She said the rest of the day was a blur.
“I use the words ‘passed out,’ because I have no memory of it,” she said. “Honestly, the first one was probably my most debilitating seizure. After trying to say no (to my friend), I remember being on a gurney in an elevator on my way to a hospital. I remember going through the lobby and thinking, ‘Oh God, people are going to see me.’ And that was pretty much it. I’m not sure I even remember anything still from that day.”
Merkatoris said after frustrating days filled with unknowns, she was diagnosed with epilepsy, at age 49.
According to the Epilepsy Foundation, approximately 1-in-26 people in the U.S. will develop epilepsy, a chronic condition affecting the brain causing recurring seizures, at some point in their lifetime.
Merkatoris said the next several years were a rollercoaster – more seizures came, and with greater frequency.
She said daily activities and professional and personal relationships were upended, and her priorities shifted.
Unsure of the reaction of others, Merkatoris, a business owner and director of a local bank, kept her condition private.
“I knew the stigma associated with epilepsy,” she said. “You lose your independence. I was on drugs that pretty much knocked me out in order to control the seizures… and then people think seizure victims aren’t capable of doing things.”
It wasn’t until she received tickets to an epilepsy research fundraiser from her son Paul for Christmas in 2017, that Merkatoris began to connect with others.
The fundraiser was put on by Lily’s Fund for Epilepsy Research, a nonprofit, volunteer-led organization focused on epilepsy research at the University of Wisconsin-Madison.
Lily’s Fund Volunteer Colleen Penwell said more people suffer from epilepsy than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s Disease combined, yet epilepsy research funding is less than half of any one of those other conditions.
Planned giving campaign
Merkatoris said her experiences, coupled with her desire to help others like her, led to her pledge $1 million to Lily’s Fund through its planned giving campaign.
Penwell said the campaign gives donors the option to express their wishes now, but delay the gift until after they’ve passed.
With virtually zero administrative or overhead costs – no salaried staff, office space, equipment, etc. – Penwell said 100% of funds raised goes directly to epilepsy research.
Since its inception in 2007, she said Lily’s Fund has donated at least $100,000 in grants to UW-Madison epilepsy research projects through various fundraising campaigns.
Penwell said the planned giving campaign gives donors the opportunity to stay connected to the cause, even after they pass, and reaches donors at every giving level.
“We know epilepsy does not discriminate,” she said. “It can strike no matter your age or socioeconomic position.”
Merkatoris said she pledged the $1 million planned donation for two reasons.
“One, I am really fortunate to be in the position I am, where I could pay the $36,000 a year just for the medication, but that is a lot of money,” she said. “So, if I can be part of a greater good to find research to get this under control, to find research for what causes a seizure, what other things can we do? What other medications are out there? That is part of it.”
The other, she said, is more personal.
“I know what my family went through when I was going through this, and I don’t want any other family to feel like this,” Merkatoris said. “This is the part where I cry, even now, years later. This is so hard on my family, and I always thought, this is what my life is. I get this. I’ve had a good life, and this is what it is. Other people deal with harder things, but what it was for my family was so hard. My daughter still will say she has PTSD – she was on the phone with me twice when I had a seizure, and there is nothing you can do, and she heard me hit the floor… If I could take that pain away from my family, that is a lot of my motivation, is to not have anybody ever have to feel that.”
After trial and error, Merkatoris said doctors were able to get her epilepsy under control.
She said she has not had a seizure since April 2016.
More information about Lily’s Fund and its planned giving campaign can be found at lilysfund.org.