McFeely: 'Dr. Freeze' battling rare disease, seeks help trying to defeat it

Dr. Freeze needs your help.

Duane Elofson, longtime owner of Moorhead's iconic Tastee Freez with his wife Fern, was diagnosed with a rare and incurable degenerative neurological disease in January 2018. Now, 19 months later, there is hope the disease's progression could at least be slowed for Elofson and others.

Or, best-case scenario, perhaps it could be cured.

But first steps first.

Dr. Freeze, the nickname given to Elofson because he's been selling tasty frozen treats since 1991, needs some money to participate in a clinical drug trial at the University of California San Francisco. So Elofson's daughter, Terri Bly, has taken to social media asking for donations to fund monthly trips to San Francisco so her father can participate in trials that so far have shown promise of stunting corticobasal degeneration (CBD), a disease that afflicts only about 3,000 Americans.

"What they've seen so far is very exciting. Because this is such a rare disease, there just hasn't been much advancement in treating it like there has been for other similar diseases like Lou Gehrig's or Parkinson's. There hasn't been any great push because not many people have it," said Bly, who lives in Minneapolis. "But some of things happening with this trial are giving hope."

CBD occurs when normal tau proteins detach from brain cells and form clumps, causing parts of the brain to atrophy and die. This manifests itself in loss of coordination, difficulty making purposeful movements like walking or lifting one's arms, rigidity, impaired balance and difficulty chewing and swallowing. The disease is progressive so the symptoms become more pronounced as time goes on, leading to the inability to walk and, eventually, death.

A person diagnosed with CBD has, on average, three to eight years to live.

"He first noticed it in his right hand. It felt like he was wearing a really tight glove. Moving his hand was effortful," Bly said. "We took him to Mayo, and they diagnosed it right away and they told us there was no cure and no way of slowing the disease's progress. It looks a little like Lou Gehrig's (the common name for amyotrophic lateral sclerosis or ALS). It affects the part of the brain that controls movement, but the thinking part of the brain stays intact."

The disease progressed as expected after the gloomy diagnosis. Elofson had difficulty gripping things and walking became more labored. Because of the problems with his hands, he can't write his name.

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Bly began researching whether there were any clinical trials for CBD and came across a first-ever study being conducted by UCSF that needed participants. Elofson applied and was accepted earlier this year, one of only 12 people in the trial. He began making monthly trips for drug infusions in July.
The issue: The study provides only a $400 stipend per trip, which barely covers the cost of a round-trip flight from Minneapolis to San Francisco for one person. Elofson needs somebody to travel with him, which doubles the cost of airfare and everything else that goes with travel like lodging, transportation and food.

"At minimum, it's $1,000 to $1,200 per trip and he needs to make 10 trips to San Francisco over the next year," Bly said. "We're trying to do this frugally, but San Francisco is like New York City. It's so expensive. There is no way to stay cheaply there."

So Bly began a GoFundMe page in hopes of raising $12,000. As of Wednesday, Sept. 4, she'd raised about $5,500.

Elofson, 69, and his wife still own the Tastee Freez, but he retired from the everyday work last year, when a couple of former employees took over operations. The hope was to be able to do the things one does in retirement, although Elofson was still spending plenty of time at the tiny shack located at 410 19th St. S. between Moorhead High School and Minnesota State University Moorhead.

"That's what stinks about this. We'd been pushing for him to retire because he had worked his rear end off at the Freez for 25 years or more. We wanted him to be able to enjoy his retirement. He loves to fish. That's his passion. And now he has trouble even gripping a fishing rod," Bly said. "He wanted to be very involved at church and do some mission trips to help people. Now he can't."

Bly said there's been hope generated by early portions of the study. She said the experimental drug appears to remove the protein clumps from the brain, which is a positive. But researchers don't know what will happen next. Will it slow the progress of the disease? Could it stop the formation of the clumps? If the protein clumps are gone, can neurons regenerate? Only time will answer those questions.

"So little is known about it. They don't even know what causes it, whether it is genetic or environmental. They have no idea," Bly said. "Even if they can find a way to slow the progress of this disease, that's a win for those who have it."

The nickname Dr. Freeze makes Elofson sound like a superhero. He's not. He could use a hand.