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Updated 9:30 AM September 8, 2009
 

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Disease sufferer meets with life sciences researcher
whose work he helped fund

In her lab on the fifth floor of the Life Sciences Institute, Johanna Buchstaller studies tumor tissue slides on a typical day. The postdoctoral research fellow's mission is to find improved treatments for neurofibromatosis (NF), which in severe cases causes disfigurement that has been compared to Elephant Man's disease.
Neurofibromatosis patient Pete Dingeman checks a tissue slide during a visit to U-M during which he presented a $31,000 award to aid research being conducted by Johanna Buchstaller, who is looking on. (Photo by Scott Soderberg, U-M Photo Services)

Buchstaller recently welcomed a visitor to the lab — Pete Dingeman, president of the Michigan Chapter of the Children's Tumor Foundation that promotes NF research. He was diagnosed with the disease at age 14.

Dingeman was on hand to meet Buchstaller and Sean Morrison, director of the Center for Stem Cell Biology, after Dingeman recently presentated a $31,000 award to be spent on NF research being performed by Buchstaller.

"My hope is that they will find a drug to stop, shrink or dissolve the growth of these tumors to help the public at large; I'd love that," Dingeman said. His visit included a look at tissue slides through a microscope. The two chatted briefly and thanked each other for their work.

"People like Pete are heroic in their efforts to raise funds to support research," said Morrison, adding awards such as Dingeman's are crucial to keeping NF research continuing, as more well-known diseases usually attract the most grant money.

Dingeman, a tireless champion of efforts to find NF treatments, currently is undergoing chemotherapy to treat tumors caused by the disease, yet he plans to run in a marathon in October to raise money to fight NF — and it won't be his first.

"It's for the kids," he said.

Often diagnosed in childhood, NF is a condition affecting one in 3,000 people, in varying degrees. In severe cases, it causes tumors to grow on nerve tissue, producing skin and bone abnormalities. Effects vary widely as some children live almost unaffected by the condition while others are severely disabled. Learning disabilities affect about half.

The Shelby Township father of two — his 25-year-old son has been diagnosed with the disease that is passed on genetically — is a foreman at Griggs Steel in Troy.

It was in June that Griggs customer Lenox Industrial Tools of Massachusetts presented Dingeman with the $31,000 Extra Mile Hero award, to be donated to his favorite charity. He chose the Children's Tumor Foundation.

In 2008 Buchstaller was awarded a two-year Young Investigator Award from the foundation. Dingeman's gift presented this year will help support Buchstaller's work to focus on tumor-initiating cells in malignant peripheral nerve-sheath tumors.

U-M has been working with the Children's Tumor Foundation since 1978 to find NF treatments, Dingeman said. In 1990 two teams, one led by former U-M geneticist Francis Collins — recently confirmed as the director of the National Institutes of Health — discovered that the most common form of the disease, NF Type 1 or NF1, is caused by a single gene on chromosome 17.

Last year U-M researchers identified the cells responsible for NF1. In a paper published in the journal Cancer Cell, Morrison and his colleagues reported that Schwann cells, which form the protective sheath around nerve fibers, proliferate to form NF1 tumors and malignant peripheral nerve sheath tumors.

"It's really great to see research and advancements that have been made," Dingeman said.

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