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In the name of hope

Conquering ataxia is a family affair for the Frigstads: (from left) Jack, Todd, Julia, Karen, and Anna.

If you would have asked her a decade ago‚ Karen Frigstad never would have predicted that hundreds of people would know her name and her story.

But since she was diagnosed with Friedreich’s ataxia in 1999‚ Frigstad has become a familiar face—and an inspiration—to many others with the disease and their families.

Frigstad was only 21 years old when she was diagnosed‚ and she wasn’t about to let ataxia control her life. She finished her college degree in elementary education. In 2002‚ she married a longtime friend‚ Todd Frigstad‚ on the steps of the state Capitol to raise awareness of ataxia and its symptoms. A year later‚ she and Todd had twin daughters‚ Julia and Anna‚ and in 2006‚ she gave birth to a son‚ Jack.

For the Frigstads‚ conquering ataxia is a family affair. Shortly before his marriage to Karen‚ Todd began working with her and her father‚ Tom Dunn‚ to raise money for ataxia research. The result of their efforts was the Karen’s Hope Ataxia Benefit‚ an annual golf tournament that supports the Bob Allison Ataxia Research Center (BAARC) at the University of Minnesota. Since the event’s inception‚ it has raised more than $260‚000.

“The entire family is involved—my dad‚ my mom‚ Todd‚ my sister and her husband‚ and my brother and his wife‚” says Frigstad‚ who has a progressive but mild form of ataxia that includes hand tremors and difficulty with speech and walking.

“Karen is bound and determined to generate knowledge about ataxia and find a cure for this horrendous disease‚” says Jennifer Crowder‚ a member of the BAARC board and a Karen’s Hope event volunteer. “To Karen‚ it’s not about her—it’s about helping other people now and in the future. Nothing stops her.”

And Frigstad only has plans to keep going. “When they find a cure for ataxia someday‚ our entire family will know that we helped with that effort‚” she says. “My dad has dreams that he will stand up on stage with all of us and say‚ ‘We did it. We can move on to the next cause now.’ I want to be there with him when he celebrates.”

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