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Raising money for and awareness of ataxia

When JoAnn Ciecierski was teaching doctors about her own disease‚ she and her husband‚ Jim‚ realized that ataxia awareness was a big problem.

JoAnn and Jim Ciecierski

Of course‚ JoAnn‚ who has the hereditary spinocerebellar ataxia type 1 (SCA-1)‚ had done a lot of research—her grandfather‚ father‚ aunt‚ and cousin also had ataxia. Jim felt compelled to do something to get the word out about this neurodegenerative disease. “I didn’t know how I was going to do it‚ but I had to do something‚” he says.

In 2003 the Ciecierskis gathered a large group of friends near their upstate New York home for a golf tournament to raise money for and awareness of ataxia. Five years later‚ Jim is planning his fifth annual tournament‚ part of which will benefit the Bob Allison Ataxia Research Center (BAARC) at the University of Minnesota.

In the last two years‚ the Ciecierskis have directed a total of $27‚000 in event proceeds to ataxia research at the University.

“I tell everyone about what’s going on at the University of Minnesota‚” Jim says. “The BAARC researchers are focused on finding something to help fight this disease. I feel that it’s the best bang for my buck.”

The Ciecierskis first learned about BAARC two years ago through former Minnesota Twins pitcher and broadcaster Jim Kaat‚ a longtime teammate of Bob Allison who donated autographed items to their tournament’s silent auction.

That year the Ciecierskis traveled to Minnesota for the Diamond Awards event‚ where they were met with “overwhelming” support. “The friends we have made here—the Allisons‚ the docs—are the best friends you could get‚” Jim says. “They treated us like family. That was special.”

Back for the event again this year‚ the Ciecierskis were encouraged to hear how the work their gifts are supporting is progressing.

Although JoAnn admits she’d be the first in line to test a new treatment‚ she is not a “why me” person. “JoAnn thinks‚ ‘How can I help someone else?’” Jim says. “Bob Allison said the same thing.”

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