Cyclist on a cross-country journey with a cause for children with rare diseases pedals through St. George

German cyclist Jörg Richter shows off the map of his cross-country bike ride to raise awareness for children with rare diseases. Richter stopped in St. George on his journey, St. George, Utah, April 27, 2018 | Photo by Hollie Reina, St. George News

ST. GEORGE — A cyclist from Germany making his way across the United States paused in St. George along the way recently. The cyclist visited friends in Hurricane, did some sightseeing in Zion National Park and paid a visit to the St. George Fire Department, all while bringing attention to his important cause.

Jörg Richter (center) poses for a photo with members of the St. George Fire Department during his stop in Southern Utah as he cycles across the United States, St. George, Utah, April 25, 2018 | Photo courtesy of Jörg Richter, St. George News

Jörg Richter is cycling from San Fransisco to New York City to raise awareness for children with rare diseases. Along his travels, Richter is stopping at various children’s hospitals to hand out teddy bears from the Care-for-Rare Foundation – an international organization based in Germany that was created for children with rare diseases.

The group primarily funds research so that children suffering from rare diseases can gain quicker access to modern genetic diagnoses and innovative therapeutic methods, information from the foundation’s website said.

The foundation refers to children with rare diseases as “the orphans of medicine,” Richter said, because there is not the kind of big money or awareness for diseases that only affect a handful of children. But many of these diseases remain incurable to date because there hasn’t been enough resources and research allocated to them.

“That is the lost group that nobody cares about,” Richter said.

The Care-for-Rare Foundation supports children with rare diseases across borders no matter what nationality, ethnic origin or financial background they come from, the foundation’s website states.

Time for the bucket list

This trip marks Richter’s fourth cycling tour on behalf of children with rare diseases, he said, but the idea behind his cycling journeys was planted when he was just 9 years old.

Jörg Richter shows off the Teddy Bears he delivers to children’s hospitals as he travels across the United States by Bike on behalf of the Care-for-Rare Foundation, St. George, Utah, April 27, 2018 | Photo by Hollie Reina, St. George News

“I got a book from my grandma back then about a guy who cycled the world from 1965 to ’67, which was quite an adventure back then,” Richter said. “So back then I said, ‘well, if I am grown up, I will do something like that somtime.'”

But “sometime” got put on hold while Richter finished school, got a job, a house and had a family. Then three of his good friends, who were his same age, died in short succession of each other.

“So I said, well it’s time for the bucket list, let’s have a look at it.”

About three years ago, Richter took his first trip across the United States from Seattle to New York City, stopping at four children’s hospitals in between, and from there, he said, he never really came back.

Something between the ears changed about purpose, Richter said, and about what he wanted to do.

Richter says he loves cycling on behalf of the Care-for-Rare Foundation because they let him stay who he is: colorful, stinky, sweaty, crazy and open-minded about meeting people.

“My main idea is to show up as colorful as possible,” he said, “to distribute the teddy bears at the different hospitals and spread awareness like a little avalanche.”

A unique brotherhood

Richter is doing the cycle tour largely alone, but he is making friends and relying on a unique brotherhood as he travels.

His current trip began April 5 from San Francisco and almost immediately he gained the support of firefighters along the route. Richter is a former firefighter from far back in the last millennium, he said, so he thought that if things were to go wrong during his travels, he could always show up at a fire station and ask for help.

Jörg Richter pauses in the shade on his way to Utah as he cycles across the United States on behalf of the Care-for-Rare Foundation, location not specified, April 25, 2018 | Photo courtesy of Jörg Richter, St. George News

When Richter cycled into Gilroy, California, on his first day out of San Fransisco he invited some firefighters for a cup of coffee and asked if they knew a place where he could pitch a tent. The firefighters instead offered him a place to stay and called firefighters in Richter’s next stop. From there it snowballed and Richter has been welcomed by the brotherhood of firefighters ever since.

Not only have they helped Richter find a place to stay or rest up along the way, they have taken up his cause on social media and have helped spread awareness for the Care-for-Rare Foundation.

“The brotherhood of firefighters is working in a way I never dreamt about,” Richter said.

During his stop in Southern Utah, he visited the St. George Fire Department.

Richter has mapped out a zig-zag route across – and up and down – the country that will take him roughly five months to complete. His final hospital stop will be in New York City but his trip will actually end in Connecticut where his son is living.

“He has stocked his fridge with German beer,” Richter said of his son.

He expects to arrive at his emotional final destination Sept. 15.

To learn more about Richter’s trip follow his travels on Instagram or his Jörg Richter Facebook page. Learn more about the Care-for-Rare Foundation and the work it is doing to research rare diseases on the Care-for-Rare Foundation website.

Email: hreina@stgnews.com

Twitter: @STGnews

Copyright St. George News, SaintGeorgeUtah.com LLC, 2018, all rights reserved.

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1 Comment

  • youcandoit April 29, 2018 at 11:59 pm

    God bless this great man. I have a rare spine disease called tarlov cyst.

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