By DANIELLE S. TEPPER
Scott Ellis of Danielsville is a District Sales Manager for Ecolab, Inc. by day, but when he sheds his suit and tie, he’s just a family man pedaling his way toward $100,000. While he never before considered himself a competitive bike rider, he now has almost 20 fundraising rides under his belt, all in the name of multiple sclerosis.
The autoimmune disease, also known as MS, is a result of the body’s immune system attacking the body’s own nerves of the brain and spinal cord, resulting in loss of muscle control, vision, balance, and sensation.
It first touched Ellis’ life in the late ‘80s when he was approximately 18 years old. “I was either a senior in high school or a freshman at Moravian College when my dad was diagnosed,” he said. “His eye doctor noticed it; he said his eyes looked fuzzy and he should go to a neurologist. So I get my eyes checked a lot, because it’s just crazy how that happened.”
Ellis wasn’t prepared for how the disease would truly affect his father, who was only 40 years old at the time.
“We just dealt with it, but we didn’t really know what it was or how it was going to impact the life of my family,” Ellis said. “As he started getting worse, I said, OK, I need to learn more about this; what am I going to do?”
A lifelong resident of Moore Township, he participated in a few MS walks around the Lehigh Valley throughout the ‘90s and mounted his first bike in 2002 for the PA Dutch Ride, a local two-day fundraiser that allowed riders to go for 50, 75, or 100 miles a day. Ellis signed up and simply sent a letter out to his Christmas card list, explaining what he was doing and why. He received a staggering response and raised nearly $5,000.
“It was amazing how many people had a connection with MS,” he said. “And that’s how it started.”
His first ride was like a baptism into the collaborative effort; he rode 75 miles to Kutztown in a “torrential downpour” with no real biking gear, spent the night in a “dorm room with no heat,” put wet shoes on the next day, and rode 75 miles back. “It rained two to three inches. I’m like, ‘what the hell am I doing, I’m soaked!’” laughed Ellis. “But I immediately bought a road bike and said, ‘I’m hooked, I’m doing this.’ Because it was just such a cool experience and these people are so dedicated to trying to make a difference, I got sucked into it right away.”
The PA Dutch ride was organized by the Delaware Valley chapter of the National MS Society (which is based in Philly). It ran from 1987 to 2010. In 2008, Ellis also started participating in the City to Shore Ride, the Delaware Valley’s biggest. With almost 7,000 bikers in attendance, Ellis said this particular ride is a “spectacle” that goes from Philly to Ocean City, N.J.
In 2012, he was approached by people in his chapter to join the MS Great 8, which was then in its third year. “I always wanted to do something crazy, so I hooked up with them,” said Ellis. The Great 8 began with two people: Catherine Tsigakos, whose brother was diagnosed 26 years ago, and Michael Zimits, who was diagnosed himself 16 years ago.
“The goals of The MS Great 8 Foundation remain to raise public awareness regarding Multiple Sclerosis, raise funds that go directly to various chapters of the National MS Society and inspire those diagnosed with MS to take charge of their lives and not let MS control them.” (http://msgreat8.org/about-us)
“They wanted to raise more money, so they started recruiting the highest fundraisers from all over. You need to raise a $5,000 minimum just to ride this one,” explained Ellis.
Ellis’ first Great 8 was eight states in eight days (there’s a new ‘theme’ each year). It began in Portland, Maine and ended in Manhattan. “It’s a crazy ride, like 700 miles total,” Ellis said.
The next year’s Great 8 was “Tour de Lake,” a 100-mile-a-day trek around Lake Ontario that began in Niagara Falls, N.Y. and ended in Niagara Falls in Ontario. “That was a wild adventure,” laughed Ellis. “Canadians are crazy in cars.” This year’s Great 8 is ‘Beach to Beach,’ down the coast from Va. to Myrtle. It takes place in October.
“Every dollar I raise goes directly to the MS Society. A huge percentage of their funds go to research, which is making a difference. There’s no cure for MS, but that’s the ultimate goal,” explained Ellis. “If you get diagnosed tomorrow with MS, your outlook on life is way different than my dad’s because of these new drugs.”
His father was able to make it to a few finish lines before the disease progressed. “He thought it was cool,” said Ellis. “He was still communicating when I started, but he didn’t seem to understand how hard it was for me.”
Charles Ellis lost his 26 year battle with MS in January of 2011.
“Honestly, it was kind of a godsend when it all came down to it. You know, people hear ‘MS’ and they think of Richard Pryor, Montel Williams, Ozzy Osbourne’s son [Jack Osbourne] … they don’t see the ugly end of it. Everything shuts down,” Ellis explained. “I got married, bought a house, had my son, and did all this cool stuff and my dad was walking with a cane or in a wheelchair and just missed it all. He didn’t miss all of it, but he’s missing it all now—grandkids and the whole nine. For all the years my son was alive [before my dad died], my dad couldn’t move or talk, he just laid in bed. He was in and out of hospice twice. It’s just depressing as hell at the end. It was progressive; it moved quick, but then it was ugly for a while. People with a slower form can literally live a good life with it.”
He added, “My dad was type of guy that did everything himself, whether it was put up a fence or pour a concrete driveway. He put decks on the house; he worked on a farm as a kid in Indiana, so he was used to doing his own work. Then it fell to me and my brother. He finally lost the ability to drive. That’s the part that sucked the life out of him, not being able to do anything.”
Ellis’ biking quests may have started with his dad, but they certainly aren’t ending now that he’s gone. He averages about four rides a year.
“If I do any more, my wife will kill me,” he laughed.
His wife, Janelle, and their nine-year-old son, Tucker, are his cheering section, said Ellis. Janelle, while not a cycler, rode with him for the City to Shore ride the year Charles passed. “We had jerseys made up and we just cruised; we were a team,” said Ellis. “She supports me at every ride. She’ll find a way to get there and yank Tucker out of school and bring him down to Myrtle. They’re always at the finish line.”
Ellis returns the support at his sons’ sporting events. Tucker does lacrosse, baseball, and football and Ellis helps out when he can. “I’m never the coach,” he said. “But I’m one of them.”
Ellis plans to continue riding until he has no choice but to stop. By the end of 2014, he hopes to hit the $100,000 mark of how much money he has raised personally.
“It’s evolved into this passion now; I ride because I’m on a mission. I’m riding every mile, because my dad would if he could,” he explained. “The first year I don’t do a ride, I am gonna be either in a hospital bed or not here, because I can’t see myself doing it. It’s such a part of me and I feel almost obligated.”
Ellis continued, “Everybody has their connection to whatever disease and mission in life and MS is just mine. It took my dad at 65. It took him long before that. These rides are such cool events and you meet this clique of people who just really give a crap. The first year I don’t do it is gonna feel weird; I’ll feel guilty as hell. That’s the way I am.”
“As long as, God willing, I can pedal—I’ll be doing it.”
To learn more about the MS Society and their mission, visit www.nationalmssociety.org. For more information on the MS Great 8, go to http://msgreat8.org. To support Scott Ellis, visit his website at http://scottsmsbiketours.org where you can make a donation or learn more about his upcoming Pork & Beer Fest fundraiser coming June 20.