TOWNSHIP OF WASHINGTON—It’s going to be epic. Former resident Matt Perrone is bringing his musical fundraiser on epilepsy — EpiPalooza IV— home to the Garden State.
The show is at Debonair Music Hall in Teaneck on April 29. His band (The Real Matt Perrone Band) is playing along with Elizabeth & the Catapult, a special acoustic set from Iron Roses, Toy Canon, and more. Guests will have the opportunity to bid on two tickets to “Hamilton” on Broadway, with a meet and greet.
Doors open at 6 p.m.
Perrone, an information technology professional, lives in Charlotte N.C., with his daughters, age 8 and 5, but grew up on Cleveland Avenue in the Township of Washington. He attended George Washington Elementary School and then Westwood Regional High School, class of 1995. He taught at Bergen Catholic High School for four years.
He tells Pascack Press, “When I was 16, a sophomore in high school, 1993, I was diagnosed with epilepsy after having two seizures. I have been fortunate to find the right medication.”
Poignantly, he recalls on Instagram, “I can’t remember the feelings but I’m sure I was scared. Having CT scans, MRIs, EEGs, I’m sure they were all new to me. The initial neurologist did not have a bedside manner that fit my personality. Months later, we found the best pediatric neurologist out there. Dr. Van Slooten.”
He says, “We were supposed to do a 24-hour EEG in the weeks after the seizure; however, I had another tonic clonic seizure. It was at that point, I was diagnosed with epilepsy, which is classified as having two or more unprovoked seizures.”
Perrone says, “I was then prescribed medication. Trying to find the right dosage led to a lot of sickness and vomiting. But, I have been on daily medication since that day. And thankfully, I haven’t had a seizure since.”
When his older daughter, then 4, had her first seizure, Perrone says “I realized I had to give back to the epilepsy community. I founded EpiPalooza and put on a concert to raise money and awareness for epilepsy. I never looked back.”
Perrone says, “While my daughter has struggled a little more than me, with 11 seizures, we still know how lucky we are, as there are 3.4 million people in the U.S. who live with epilepsy and some face challenges daily.”
He says on his event site, of his daughter’s seizures, “It began as a focal seizure which led to two tonic-clonic seizures that day. There was a nine-month period before her second seizure. At that point, she began daily medication. Over the course of the next nine months, her body went through eight more seizures. During that time, the doctors tried tweaking her medication. Her seizures have historically been focal seizures occurring after she falls asleep.”
After the 10th seizure, he says, “In addition to her medication, we switched her to the modified Atkins diet. We continued that for a period of time and then transitioned to a modified diet including no added sugars. For over a year, she was seizure-free with the medication and diet until a breakthrough seizure in September 2021.”
She recently celebrated being a year seizure-free.
“She is now 8 years old and continues the same diet. We could not be any prouder of this second grader as she is strong, brave and filled with tenacity.”
Perrone credits his mother for all that she gave him. “I never recognized how difficult it must have been to see me have my seizures. As she was the one to witness both of mine. Then, I would see my daughter, as I held her in my arms as she had her first seizure. It was heartbreaking. Only then, was I able to understand what my mom went through,” he tells Pascack Press.
He also recalls Charlie Devine, a friend’s dad in the township who recently passed away.
“Charlie Devine was a man that everyone could afford to be a little bit like. He and his family have been like a second family to me. His son, Brian and I became friends in grade school and I always knew that no matter the time, the day, the holiday, I was always welcome. Charlie was always there for advice, even once I moved to North Carolina.”
And he recalls, fondly, his freshman math teacher, Judith Coutts. “She taught me geometry in 9th grade and was the advisor in the math club. I eventually became a math major at James Madison and then became a math teacher at Bergen Catholic. I came back to let her know and she was so kind and gave me a geometry book and resources. She was a great teacher and really cared about the students.”
He says, “Over the years, I’ve tried to find her on social media but no luck.”
This is the fundraiser’s first time in New Jersey, supporting CURE Epilepsy and the Epilepsy Foundation.
It’s been more than 15 years since Perrone has played a show in New Jersey; he says he’s very excited.
“In doing EpiPalooza, I try to educate people and let them know that epilepsy is a lot more common than people think, as 1 out of 26 people in the U.S. will develop it at some point in their life,” Perrone says.]
He adds, “It’s important for people living with epilepsy to know, but also the parents and caregivers that there is a strong correlation between epilepsy and mental health. Adults with epilepsy are twice as likely to report depression than those without and those with active epilepsy are three times as likely.”
The fundraising goal is $15,000, with employer matching available. For more information or to get tickets, visit epipalooza.net.