Benefit raises $270,000 for family’s medical expenses

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A benefit Saturday in Carrington, N.D., on behalf of the Kulsrud Family was an enormous success, according to one benefit coordinator.

Robin Anderson, family friend and one of the benefit’s coordinators, said that $270,000 including general donations was raised for the Grace City, N.D., family.

“The benefit was a huge success,” Anderson said. “So many people opened their hearts and their wallets to our friends.”

Jay and Laura Kulsrud have three sons —Lane, 11, Tanner, 9, and Ty, 6 — all of whom have been diagnosed with an extremely rare neurodegenerative disease called pantothenate kinase-associated neurodegeneration, for which there is no known cure.

The disease leads to nerve damage and several other debilitating symptoms, and while lifespans are variable, it can ultimately lead to premature death, according to a report published in August 2002 and updated in March 2010 by Allison Gregory of Oregon Health and Science University

The benefit was held to raise money for the family’s medical and travel expenses to Oakland, Calif., this fall where they hope to become part of an 18-month experimental drug trial to treat the disease.

“We just simply cannot say thank you enough to all those who helped and took part,” said Laura Kulsrud. “It was honestly just amazing and I’ve never seen anything like it before.”

Anderson said an estimated 2,000 to 2,500 people were in attendance, with the live auction raising $80,000 on its own and more than 500 items sold at the benefit’s silent auction.

“It was awesome, I don’t really know what else to say,” Laura said. “Everybody came with open hearts and it really showed.”

Anderson said the highlight of the night was when Dan and Ginger Fladeland of Watford City, N.D., purchased a golf cart that was up for bid at the auction for $12,000 and then gave it to Lane, Tanner and Ty as a gift.

She said another golf cart at the auction was purchased for $15,000 by Wylie and Vickie Bice of Killdeer, N.D.

“The Fladelands and Bices do not even know the family, but came out to support the benefit after hearing about it from us at a junior high rodeo where our kids compete together,” Anderson said. “To see this act of kindness from people who don’t know the family was just unbelievable.”

Laura said that while Lane is old enough to appreciate what the community did on the family’s behalf, she said youngest sons Tanner and Ty did not understand why so many people were in attendance but said the boys had a great time nonetheless.

Laura said the most recent update from doctors indicates the family should be heading for California in September to complete testing before moving forward with the experimental drug trial.

Sun reporter Brian Willhide can be reached at 701-952-8454 or by email at bwillhide@jamestownsun.com

Tags: local news, news, benefit