Local group has worked hard for breakthrough in Lou Gehrig’s disease

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Updated: November 16, 2011 1:30AM

When researchers earlier this week reported the discovery of a common mechanism — a cause, if you will — behind the various forms of the fatal neurological disorder known as Lou Gehrig’s disease, the announcement held special meaning for one group of everyday Chicagoans who have been dedicated to such a breakthrough for more than three decades.

It was 1976 when Les Turner, a 36-year-old men’s clothier from Glenview with a wife and three young children, was diagnosed with amyotrophic lateral sclerosis (ALS), the disease that had claimed the life of the Yankees great Gehrig at about the same age.

$42 million for research, patient care

A year later, Turner’s family and friends helped him start the Les Turner ALS Foundation to fill what they saw as the then-gaping void in research and support for those afflicted with the brutal effects of the disease. By 1978, Turner was dead.

Fast-forward to this week’s publication of the study in the scientific journal Nature by researchers working out of the Les Turner ALS Research Laboratories at Northwestern University’s Feinberg School of Medicine, including senior author Dr. Teepu Siddique, who holds the title of the Les Turner ALS Foundation/Herbert C. Wenske professor.

The remarkable part is what happened in between: how that small group of not particularly wealthy family and friends managed to spawn an organization that has raised $42 million since its inception, most of it directed into efforts at Northwestern, where the group now funds two research labs and a highly acclaimed multidisciplinary patient clinic.

“When I got a copy of the press release [about the new research findings], I cried for an hour,” said Harvey Gaffen, 72, of Highland Park, longtime president of the Les Turner ALS Foundation.

Gaffen was literally there at the beginning. As Turner’s brother-in-law and best friend, they were playing tennis together on vacation when Turner inexplicably fell, then fell again later throwing around a football, the first signs of the neurodegenerative disease that causes the muscular system to waste away. He was also there in the hospital room when the doctor delivered the bad news to Turner.

“The doctor said, ‘You’ve got a couple years to live. Get your affairs in order,’ and he walked out of the room,” Gaffen recalled.

“There was no information about ALS. No research. No support group. No nothing,” Gaffen said. “We didn’t know what to do. Cried a lot.”

Gaffen said it was eight to 10 frustrated people sitting around Turner’s dining room table who came up with the idea to start a foundation. He said it was Turner himself who suggested the fund-raising strategy that gave the group its own breakthrough.

Turner had thrown out some old record albums and was amazed to see neighborhood kids in his driveway rummaging through the garbage, Gaffen said. He saw a market.

“He said, ‘Why can’t we do with records and music what Brandeis did with books?” said Gaffen, a retired accountant.

That was the start of the foundation’s highly popular Mammoth Music Mart, a used music sale held for 25 years under a massive tent in the Old Orchard shopping center until changes in the music industry necessitated a strategy switch in 2002. Part of the sale’s success came from recruiting American Bandstand’s Dick Clark as honorary chairman.

These days, the group’s biggest fund-raiser is its ALS Walk4Life that typically draws 5,000 walkers to Montrose Harbor. The 10th annual event is scheduled for Sept. 10. For more information, go to lesturnerals.org.

Says researcher Siddique of the foundation: “They’ve kept us going through their enthusiasm.”

‘Very consistent, loyal supporters’

With recent federal cutbacks having eliminated his research grant from the National Institutes of Health, Siddique said the Les Turner ALS Foundation is now the primary funder of his team’s research.

“They have been very consistent, loyal supporters. That’s why I’m here,” said Siddique, who came to Northwestern from Duke in 1991 and has been responsible for other breakthroughs in ALS research.

The team of 23 researchers involved in this new discovery believe it could lead to an effective treatment.

Currently, there is none for a disease that afflicts an estimated 35,000 Americans at any time, said Wendy Abrams, the foundation’s executive director, who started there as a volunteer in its early days. Half are expected to die within five years of diagnosis.

“It’s just a dream come true to have this finding by Dr. Siddique,” Gaffen said. “The disease is so terrible.”

Makes me think of all those donations over all those years, from people hoping to make a difference and from those just looking for some good tunes.