By STEVE BRADLEY
PITTSFORD, N.Y. – Mike Mooney tried his best not to draw attention to himself during the decade he worked as a high school and college basketball referee.
Now, Mooney, is stepping into the spotlight for “Mike Madness,” a campaign to fight Parkinson’s disease, the condition that sidelined his officiating career.
“I’ll be honest with you, it’s a little uncomfortable for me,” Mooney, 53, said. “But I think it’s the right thing.”
The Pittsford resident is leading the development of Brain Storm, a therapeutic app designed for Apple Vision Pro that not only tracks stimulation from the fingers, but is also an audio and video stimulus.
“Think of it like a pulse generator,” Mooney said. “If you get deep brain stimulation with implanted electrodes in your brain, it generates pulses. It’s very similar to a pacemaker. It’s just not a constant, it’s a certain pattern on and off, but you can control those stim parameters.”
The project is personal for Mooney, who exhibited symptoms of Parkinson’s, such as numbness, tingling and general pain for several years.
“Even way back when I was coaching the kids’ T-ball and baseball, like coach pitch, I knew something wasn’t right,” he said. “I couldn’t let the ball roll off my fingers like it normally would. My coordination was just changing.”
He was thought to have had Multiple Sclerosis in 2010 and was misdiagnosed with essential tremors in 2017 before being diagnosed with Parkinson’s in 2020 at the age of 49.
Mooney was able to stay on the court for a couple of more seasons before concluding his career at the Ronald McDonald House All-Star Game in 2023.
A heart for hoops
Basketball has always been special to Mooney, who grew up in Muncie, Ind., and played varsity baseball and basketball at Burris High School.
He had opportunities to play at some smaller colleges but opted to attend the basketball-crazed University of Dayton, which has been home to the NCAA Men’s Tournament’s First Four since its inception in 2011.
“Basketball has always been my No. 1 sport,” he said.
Mooney, a 1993 Dayton graduate, met his wife Marcy in college and the couple moved back to Rochester, her hometown, to raise their family.
Mike, who operates a health care market research business, and Marcy, an elementary school principal, are the parents of four graduates of Pittsford Mendon High School.
In fact, it was a random conversation with former Mendon boys’ basketball coach Greg Bischoping that got Mooney started in officiating.
“I was out doing yard work one afternoon and he was walking by and asked me to go to a clinic with him,” Mooney recalled. “He was looking to get into it, and I was looking to go support a friend. I had no interest in officiating.”
Until Rochester native Jeffrey Anderson, who has officiated seven NCAA men’s Final Fours, and others started talking.
“Jeff Anderson was there every night telling stories and I was hooked,” Mooney said. “That was the beginning of it.”
Mooney worked three seasons of high school boys’ games before moving up to the college ranks where he worked area Division II and III men’s games in addition to a Section V schedule.
Even though he is no longer on the court, Mooney has continued to stay in the game as a shot clock operator at both St. John Fisher and Brockport.
Pursuing a solution
Since learning of his diagnosis, Mooney has participated in clinical trials, volunteered with Parkinson’s support groups and had many conversations with doctors, researchers and others regarding possible solutions.
While many of the conversations were positive, none were leading toward a new product getting any closer to market. Thus, the idea for Brain Storm was born.
“I said. ‘What the hell, I’m going to develop my own thing,’” Mooney said. “Instead of just the one-dimensional vibratory stim to the fingers, it’s just better to have the multi-dimensional, multi-sensory stim. With the Apple Vision Pro, we’re at the leading edge of this technology, but we’re not quite there. … I’ve met with quite a few people doing clinical research trials and the concept behind this and, I think it’s going to work. It’s been a long developing process.”
Mooney has informally collaborated with researchers at the University of Rochester’s Frederick J. and Marion Schindler Cognitive Neurophysiology Lab and Rochester Institute of Technology’s MAGIC Spell Studios to provide proof of concept.
While Mooney has received positive feedback from people in the research community, he has also consistently heard that there is not money available to produce the product. In other words, he needs to build it for someone to test it.
He has paid out of his own pocket to this point but needs additional funding to complete the app development and haptic components such as the gloves and firmware that communicate wirelessly between the simulators on the fingers and the headset.
His daughter, Ellie, who played on Mendon’s 2019 Class A state championship team, has created a GoFundMe that has raised more than $16,000 of the $200,000 goal.
His sister, Jamie Melton, a public relations professional in Nashville, developed the concept of “Mike Madness.”
“She came up with the idea,” Mooney said. “She wanted to do a fundraiser to support me the past couple of years and I’m like, ‘I don’t know, it’s kind of quirky.’ She didn’t really know at the time that I was developing this app when it came around this year, she kept asking me about it. She’s like, ‘Come on, Mike Madness, basketball, it makes sense. It’s catchy’.”
Mooney knows that getting Brain Storm across the finish line won’t be easy, but he is inspired by the idea of helping others who are dealing with the same things he is.
“My goal is to create something that’s a platform for everybody to use, so people can learn from what works and what doesn’t,” Mooney said. “I want to make this an open-source platform so people can test it, see what works and learn from each other.
“If it works, the idea is that it will work for multiple underlying problems, not just Parkinson’s, but OCD, chronic pain, depression, epilepsy. A lot of those underlying problems are very similar with dysfunctional patterns in the brain.”
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