Ellie Muoio & Integrated Systems
Read: Meet Ellie – One in 26 Event Chair
Victor, NY native Ellie Muoio is not one to sit on the sidelines. An avid runner, maxing out the treadmill at level 12 was a common occurrence. She played soccer in high school and college, and has remained involved in the sport through participation in adult leagues as well as coaching local youth soccer teams. During the week, she keeps up with active, young minds as a Reading Specialist at Buckman Heights Elementary School in Greece, NY. Weekends find her spending time with family and friends, typically enjoying a day on Canandaigua Lake.
In 2019, Ellie’s world was turned upside down when she suddenly experienced a grand mal seizure while out on a long run. Shortly after, she experienced a second seizure. And then a third. Without any personal or family history of seizures, a diagnosis of epilepsy came tearing in from left field and hit hard.
“When I had my first seizure, I was in denial,” Ellie remembers. “It felt like my world came to a screeching halt. Not only was I dealing with the physical pain of falling during the seizure, but I also didn’t have a clear idea of what had happened. Even years later, I still don’t have clear memories of the time spent in the emergency room.”
Ellie was released into the comforting care of her fiance Stefan, her parents Mark and Marcie Hamilton, and her sister Mollie Hamilton. But all the love and support in the world could not dull the painful realization that her life had been forever changed and recovery, both physically and mentally, was going to take time. A lot of time.
“The loss of my independence was hands down the hardest aspect,” says Ellie. “My license was suspended so I couldn’t drive and I felt like such a burden needing to rely on Stefan and my parents for everything. And while I am incredibly fortunate to have a supportive family, I have never felt so helpless and isolated. They tried everything to help me, but I was so angry and really nothing anyone could do could alleviate that. It was a tough, overwhelming experience all the way around.”
Last fall, her mother discovered EPI and the One in 26 Challenge via social media. “It was something we could do to support her. I’m not sure she was really on board with the idea, but I ordered team t-shirts and signed us all up,” recalls Marcie. “We went to the kick-off event at Wickham Farms and we discovered other families with similar stories. It was so uplifting. After months of feeling alone, we suddenly realized we weren’t.”
At the beginning of 2022, Ellie was asked to join EPI’s Associate Board of Directors. She attended an initial meeting in May and shared her story about her journey with epilepsy. “That was the first time I had ever said it out loud. I have epilepsy. It was liberating.”
In addition, Ellie is serving as the Event Chair for the Rochester One in 26 Challenge, hoping to raise awareness about epilepsy, and the many services and resources offered by EPI.
“It was a struggle – there’s really no other way to put it,” says Ellie. If I can help even one person who is in that uncertain, gut-wrenching space, then this involvement is worth it. It’s not a visible disability and it can be difficult to talk about. Other people frequently don’t understand what it means to have epilepsy and overcoming that while you’re already experiencing an emotional rollercoaster ride… it’s just a lot. Like, man… I just can’t today.”
Today, Ellie’s seizures are controlled with medication and her emotional well-being is back on track. She still runs and has recruited Stefan, who was not a runner prior to her seizure, her dad, and her sister as her official running buddies. In fact, Ellie, Stefan and their friend James attended the 2021 Kick-Off Event and then immediately drove to Corning to participate in the Wineglass Half Marathon together.
“It was a feeling I will never forget, ” says Ellie. “It was not my fastest finish time, but there was this new appreciation for running again. Even with epilepsy, I did it. I also experienced a tremendous almost overwhelming sense of appreciation for my husband, friends, and my family for supporting and cheering me on through it all.”
Emotionally, Ellie has found her voice and looks forward to this year’s One in 26 Challenge as well as upcoming work with EPI’s Associate Board.
Integrated Systems – One in 26 Presenting Sponsor
Originally from Buffalo, NY, Mark Hamilton worked in Houston, TX for Texas Instrument before moving to Rochester, NY to start Integrated Systems in 1983. An engineer by training, Mark combined these skills with sharp business acumen to grown the business into a thriving organization focused on data warehousing, efficient systems backup and secure hosting solutions. With a diverse client base, Integrated Systems has become the go-to solution for top tier government and private clients.
“We’ve always had a culture of giving back, most recently working to build LTE networks in underserved urban and rural areas,” says Mark. “So much of today’s life is dependent upon a good network connection. Without it, people are at a clear disadvantage.”
This work has been incredibly fulfilling and Mark and his business partners were looking for another way to become involved in the community. Without any warning, fate intervened and Mark found himself in the new and unfamiliar world of epilepsy.
“Initially, it was crushing, with lots of tears and some anger,” recalls Mark. “No parent wants to see their child suffer and we had to learn to take one day at a time, allow the process to play out, and be as supportive as we could.”
Mark remembers feeling scared and helpless as they struggled to understand the genesis of Ellie’s seizures. Ellie had always been a vibrant, active, outgoing person and he and Marcie desperately wanted that to return for her. They tried to be patient, but understanding the new diagnosis and living with the constant fear that another debilitating seizure might be right around the corner was challenging.
“This sort of thing can’t be rushed,” says Mark. “We had to find ways to feel confident and hopeful that medications, treatment and the grace of God would minimize or eliminate the effects of epilepsy.”
Mark is grateful that Marcie discovered the One in 26 Challenge last year. He believes connecting with people who have had similar experiences and were willing to share their stories gave Ellie’s recovery the shot in the arm it needed. Like Ellie, Mark was so moved by this experience that he pledged support from Integrated Systems to be the One in 26 Challenge Presenting Sponsor not only in 2022, but in 2023 and 2024 as well.
“It’s a journey and not an easy one at that,” says Mark. “This diagnosis was difficult for Ellie to accept and it broke my heart watching her struggle. I can guarantee there is a parent out there, uncertain about how to handle this. The alignment with our desire to do more with the business was serendipitous and I am pleased to support this event this year and into the future.”
Mark stresses that amidst the uncertainty of the last few years, there were unexpected, pleasant aspects as well. Ellie’s reliance on her parents meant increased time together, something not every parent has the opportunity to experience as their child matures into young adulthood. In 2020, Ellie and Stefan got married and this experience with epilepsy has only strengthened their familial bond.
“We consider ourselves fortunate. Ellie’s seizures are under control with medication and the side effects have been minimal. It will be a regulated journey for the rest of her life, but we understand that it could be so much worse. Perhaps one day, we can be a light for others to find their way.”