Bike MS: Willamette Valley is this weekend. (courtesy National MS Society)
When John Tietjen is riding his bike on the road, he said drivers will “look at me and they’ll look at my helmet and go ‘hey nice fish.’”
Ziptied to the top of his helmet is a rubber slug riding a rubber fish.
Tietjen and some of the 26 members of his team, Team SlugFish, will wear the outfitted helmets during Bike MS: Willamette Valley this weekend. So far, the team has raised more than $18,000 that will go toward research and support for those suffering from multiple sclerosis.
MS causes the immune system to eat away at the protective covering of the nerves. The disease effects everyone differently, but many experience pain or impaired coordination.
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There are several people on Team SlugFish who are suffering from MS and Tietjen said, “Most of the people who do bike MS for more than one year or several years, they have a family or friend connection with MS.”
Tietjen’s connection is his brother and cousins.
Tietjen is known as the pie guy, because he bakes pies for the team to eat on Saturday after the ride.
He credits the pies with luring a top fundraiser onto his team years ago.
For three years in a row, Tietjen said his team raised more than $100,000. This year’s top fundraising team has collected more than $41,000 as of Thursday.
He said in the first decade he participated in the event – it’s now his 26th year riding — research was focused on developing better drugs to help keep inflammation down.
Now, Tietjen said the drugs may be out there but they’re woefully expensive.
“It’s like everything else, it’s complicated. There may be solutions out there but they’re going a lot of money,” he said.
Tietjen said if someone with MS is only spending a couple thousand dollars a month on drugs, they’re doing pretty well.
He hopes that one day there will be an answer to why people get MS and how to fix it. This weekend’s event is an opportunity to get one step closer to that goal.
“You can’t think of a better way to spend a weekend,” Tietjen said. “It’s the best weekend of the year for me.”
John Tietjen’s Team SlugFish helmet. (courtesy John Tietjen)
Tracy Leeper, president of the Oregon chapter of the National MS Society, said the biking event — which starts at Western Oregon University — takes registrations up to the day of. It costs $250 to participate and distances range from 19 to 160 miles. Registration info can be found online.
Three years ago, organizers added a victory lap to the event on Sunday where MS-affected people can ride a lap around on adaptive cycles.
“Sunday morning is a very emotional Sunday,” Leeper said.
Leeper said one of the challenges with the immune disease is that not many people know about it.
“I think what I find with this community, they’re resilient, they’re living with an invisible disease. Sometimes I wonder would I have the courage to get up every day and live my life like they do,” Leeper said.
She said a recent study the society helped fund showed there are twice as many people suffering from MS than previously thought. In Oregon, she said that number would be around 19,000.
In addition to funding research, the society has an MS navigator program that helps people who have been recently diagnosed with the disease.
Leeper said the program helps people pay bills or can be “something as simple as helping them purchase an air conditioner.”
The chapter president said people with MS “want to continue to live active lives and stay employed and they don’t want people to treat them differently.”
Have a tip? Contact reporter Saphara Harrell at 503-549-6250, [email protected] or @daisysaphara.
