Tanner Hinds vividly recalls March 27, 2017, the day he met his newborn twin nephews, Noah and Easton. 

He also remembers the day, three weeks later, his family learned Noah had tested positive for the gene for adrenoleukodystrophy (ALD), a devastating disease that can cause progressive neurologic degeneration. 

“That’s when the idea of doing a benefit show first popped into my head,” says Hinds, a Cincinnati-based comedian. 

He began searching for potential beneficiaries and found the University of Minnesota, home to the world’s largest blood and marrow transplant (BMT) center for boys with ALD. BMT can stop the disease’s progression, but brain deterioration and the symptoms it causes cannot be reversed, which makes early detection critical. 

Through his comedy show and a crowdfunding campaign, Hinds raised more than $6,000 for ALD research, part of which came to the U. 

“I was very impressed with the work the U of M is doing,” says Hinds. “They help families affected by ALD dream of a brighter future. It was an obvious choice.” 

At the U, investigators are working to better understand how and why ALD progresses, and they eventually hope to be able to tell families like the Hindses whether their loved ones are going to develop cerebral disease—before it causes irreparable damage. 

With timely detection on his side, Noah has a bright future, but many children aren’t diagnosed until after symptoms appear. The Minnesota newborn screening panel has included ALD for more than a year, says Kelly Miettunen of the U’s leukodystrophy program. Several other states are adding ALD to their newborn screening panels as well. 

“Our team of ALD experts is committed to developing safer, more effective therapies that will improve outcomes and save lives,” Miettunen says.

Make your gift to ALD research at the U.