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Jörg Richter is making his way from San Francisco to New York on his bicycle, propelled by his advocacy on behalf of those affected by rare diseases. A retired firefighter, he cycles alone, covering 45 to 65 miles each day and calling on fellow firefighters to house him when he needs rest.

Richter was first drawn to advocacy through a friend, whose child was diagnosed with a rare disease. He introduces himself as an ambassador of Care for Rare, an organization he described as “the spider in the center of the web,” collecting information about different rare diseases and ongoing research, and connecting children and families with treatment options.

He has cycled throughout the U.S. and Europe, to raise awareness about thousands of rare diseases that affect children.

On Monday he stopped in Minneapolis to visit the scientific director of the Cancer and Blood Disorders Program at Children’s Minnesota, pediatric oncologist Kris Ann Schultz. The physician leads two international cancer registries. One of them, 

a registry for pleuropulmonary blastoma (PPB)

, a rare lung cancer and related rare conditions, has enrolled over 1,000 patients.

The second international registry housed at Children’s is for the rarest forms of 

. Schultz is helping to use information gathered through these registries to improve early diagnosis, and to develop new therapies.

“If there’s something rare in your own family, in your own history, learning as much about it as you can, connecting with people who are studying that condition, considering contributing to research – I think those are all really important ideas that we want everybody to consider,” she said.

Schultz has found that if cancer risk can be identified through family histories, children can be screened early. “That can really make a difference for people,” she said. Her goal is to detect tumors early, when they can be treated through surgery, before a child would need radiation or chemotherapy.

Emily Scheidecker was treated at Children’s Minnesota for ovarian cancer when she was 10, and again for another rare form of cancer, five years later. Enrolled in the rare ovarian and testicular stromal cancers registry herself, Scheidecker has been a part of Schultz’s research efforts. She has been in remission for the past 18 years.

“I am actually a registered nurse, and doing well. Life is good,” she said.

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Sarah Gelbard

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As he cycles across the U.S., rare disease advocate Jörg Richter stopped at Children’s Minnesota Monday to learn about ongoing research efforts to treat rare childhood cancers.

Cyclist brings focus to rare cancer research at Children’s Minnesota

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