When Marc Stecker received a diagnosis of primary progressive multiple sclerosis in 2003, he “dove head first into MS research.” But he didn’t stop there. Stecker, a New York City resident, created an award-winning blog to share his findings with other MS patients as well as MS researchers and clinicians. Now, the 57-year-old former punk rock ‘n roller and director of DVD production for a renowned international music company, is being honored for his leadership efforts with an award that’s named for him.
The Marc Stecker Award was conceived by the Buffalo Neuroimaging Analysis Center (BNAC) at SUNY Buffalo, “to foster innovative and patient-centric research by BNAC researchers seeking a cure for multiple sclerosis.”
Stecker was a 39–year-old newlywed when he first noticed he was limping. “Looking back, there were symptoms before that, but it was the limp that sent me to the doctor,” Stecker recalled. “I received my official diagnosis a year later and I stopped working less than four years after that.”
Stecker became active on MS forums on the Internet, where he started posting about what he was learning about the disease. “I found that I had a facility with translating medical speak into English,” said Stecker. “I was posting a lot because there was so much research. I almost considered it a job. People on the forum started saying, ‘You should really start a blog. This is useful information.’”
By the summer of 2008, Stecker needed a wheelchair to get around. He started his blog — Wheelchair Kamikaze — in early 2009. “The blog started as a repository for my pictures and videos. I mounted a camera to my wheelchair and rode around Manhattan taking photos and videos. Later, I started writing about life with MS and medical research. I never realized anyone other than friends and family would see it,” Stecker said.
But he was wrong. Stecker’s blog has won various rewards and has garnered recognition from the online MS community and beyond. “It is read by patients and neurologists,” he says. To date, WheelchairKamikaze.com has received almost 4 million page views. Due to worsening MS symptoms, Stecker said he rarely posts on the blog these days. Yet blog visitors can still find fascinating information; scenic and hilariously narrated videos of Stecker’s travels around the Big Apple; and honest, hard-hitting commentary about America’s healthcare system, and the brutal realities of living with a chronic, debilitating illness.
Stecker’s blog and MS advocacy has connected him to patients, doctors and researchers from all over the world and he has made countless friends in the MS community.
Stecker’s notoriety has earned him interviews with CNN commentator and neurosurgeon Dr. Sanjay Gupta, NPR, and Multiple Sclerosis Discovery: the Podcast of the MS Discovery Forum.
“Having MS and starting the blog, woke up my inner science nerd. I went to a science high school and I was a geeky science person but I never pursued it before,” Stecker noted.
Due to his leadership in the MS community, Stecker became a founding member of BNAC’s Advisory Council in 2010. “It’s me and about a dozen other patients. We have quarterly meetings by Zoom and the researchers fill us in on the latest projects and we give input on what directions research should take. It’s a synergistic relationship,” said Stecker.
“Through the years, I’ve given a lot of input. I pushed them to study the relationship between Epstein Barr virus and MS. I really stressed that one of the keys to finding a cure or a treatment for MS is finding out the role Epstein Barr plays in genetics and autoimmunity. So, they started studies on ways to image [neurological] inflammation associated with Epstein Barr and MS.”
About a year ago, Stecker received a phone call from someone at BNAC. “The person said they would be starting an award named for me that would be going to the most promising graduate student, research associate, etcetera. I was very proud and flabbergasted.”
The first Marc Stecker award was given out in early December 2020 at BNAC’s online holiday party. The award — which includes a $1,000 cash grant and a framed photo taken by Stecker during one of his wheelchair rides around Manhattan — went to a “brilliant Ph.D. candidate from Macedonia,” said Stecker. Additionally, the winner received a letter from Stecker.
“The letter says that the primary objective of the winner should be to put themselves and every other MS researcher and clinician out of a job by eradicating MS. When researching any disease, it’s easy to get caught up in the intellectual and academic puzzles. But remember there are people involved who are suffering miserably. At the heart of every great researcher is a humanitarian. Don’t separate the research from the people.”