Bowling benefit Sunday to raise money for a cure for rare genetic disorder that affects Lawrence boy

A local boy’s battle with adrenoleukodystrophy, a rare genetic disorder with no cure, often known as ALD, has inspired a fundraiser in Lawrence this weekend.

Matt Reimer, an 11-year-old student at Lawrence’s West Middle School, was diagnosed with ALD three years ago, after his skin darkened, his concentration worsened and he had flu-like symptoms. He now has to take daily medications because his adrenal glands no longer function, and he’s on a special diet and drinks Lorenzo’s Oil, which halts the progression of ALD.

The benefit for ALD will take place Sunday from 3 p.m. to 5 p.m. at Royal Crest Lanes, 933 Iowa St. For $10, participants get bowling shoes plus two games or two hours of bowling, whatever comes first. There will also be a bake sale fundraiser. All proceeds benefit the Myelin Project; ALD damages the myelin sheath, the fatty covering on nerve cells in the brain.

“Our goal is to raise money for a cure,” said Matt’s mother, Emily.

Sunday’s event will also feature a bone marrow drive, as bone marrow can sometimes stop the progression of ALD. The drive is looking for healthy individuals between 18 and 55. On Sunday, potential donors just have to give a cheek swab in order to type their DNA.


A previous version of this story incorrectly identified Matt Reimer’s middle school.