Les Turner Foundation: ALS Research and Care Powerhouse

Harvey and Bonny Gaffen didn’t plan to dedicate their lives to raising money to fight Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig disease.

But in 1976, the rare disease struck Les Turner, who was Bonny’s brother-in-law, Harvey’s best friend, and the father of three young children. His illness launched the Gaffens on their journey to help.

The result is extraordinary. The Les Turner Foundation has already raised more than $48 million, funded breakthrough research at Northwestern University, and offered extensive support for ALS patients, families and friends. It is poised to grow, even as Harvey steps back from his leadership tenure with the foundation.

A Sad Diagnosis—An Ambitious Goal

The Gaffens were vacationing with the Turners in Florida when Les took a clumsy tumble while playing tennis, which was unusual for the athletic 36-year-old. The awful diagnosis soon followed; Turner’s nerves and muscles would degenerate, which would eventually lead to paralysis and death.

“ALS is the opposite of Alzheimer’s,” Harvey explains. “Your body shuts down, but your mind remains intact. It is the worst possible dying process.”

Turner’s family and friends rallied to help, but could find no resources.

“There was no available information about the disease, no clinics, no brochures, no research taking place, no one to speak to for guidance about what to expect, what equipment would be needed,” Harvey says.

The group felt powerless, until they decided to do something to help future ALS patients and their families. Their goal: establish the world’s first research laboratory dedicated solely to ALS.

Artists’ Night Out—Nude Sketch Fundraiser

Soon thereafter, the group held its first fundraiser, “Artists’ Night Out.” Bonny giggles as she explains, “It was a little risqué. Guests gathered in a Highwood ballroom for dinner and to draw charcoal sketches of four nude artist models. The best one earned a prize.”

The event raised more than $5,000, which was no small amount in 1977, but they knew they had to do bigger and better to establish that lab.

Mammoth Music Mart Launches Lab

Then Les contributed a winning idea: host an exchange of used records called the “Mammoth Music Mart.” While sitting with Turner in his living room, the group decided to write a letter to American Bandstand’s Dick Clark asking him to be the Honorary Chairman. To their delight, Clark responded, and the Gaffens traveled to Hollywood to cement the relationship.

Sadly, Turner died before the event was held, but the group’s devotion to his memory and cause ensured its success. “The PR was extraordinary,” Harvey says. “People lined up all night. That first sale was in 1978, a four-day sale that raised $25,000, which was enough to establish the first Les Turner lab at Northwestern University.” The annual event at Old Orchard grew to last eleven days and attracted customers from around world.

Walk4Life, Gala, Canning and More

After 25 years, the record industry changed, and a new fundraising vehicle was needed. They started the “Les Turner ALS Walk4Life.” The walk is along Chicago’s lakefront and raises approximately $850,000 each year.

The September walk routinely attracts 90 percent of Chicagoland’s ALS patients and their supporters. Each patient brings a team dressed in matching shirts, producing an uplifting myriad of colors. “The patients see and feel the love and support,” Bonny says.

Other annual fundraisers include tag sales in Turner’s hometown of Glenview and 20 other suburbs, and a spring black-tie gala.

Breakthrough Results, Patient & Family Care

The Foundation now funds not one, but two, Les Turner research labs at Northwestern, which have produced a significant ALS breakthrough—the discovery of a common protein that may cause all forms of ALS.

Furthermore, the Foundation provides extensive support for patients and their families, including home health services. ALS patients and families now have the information and resources, that Les Turner and his family were lacking.

Inspiring Examples For Others

Bonny particularly loves the support that the Foundation’s activities generate. “You don’t get to this success without an army, a caring army,” she says. “It sets examples for kids, grandkids and other families to do for others.”

The Gaffens set an inspiring example for everyone.

“It’s incredible to know where we started and see where we are now,” Harvey says. “The idea that started in Les’ family room with friends saying ‘Let’s write a letter to Dick Clark’ has grown into a world leader in ALS research and patient care.”

The 26th Annual Hope Through Caring Award Dinner Dance will be at the Ritz Carlton on March 16, and Dr. Scott Heller of Northwestern University Feinberg School of Medicine will be honored. Make It Better is proud to be the media sponsor.

 

Other upcoming events include:

Iron Horse 5K, April 13, in Elgin

Tag Days Donation Drives, throughout May in communities across the Chicago area

4th Annual Strike Out ALS 5K, July 16 at U.S. Cellular Field, Chicago

12th Annual ALS Walk4Life, September 21 (tentative) at Solider Field, Chicago

 

Photo: Ken Hoffman of Deerfield, Les Turner ALS Foundation executive director Wendy Abrams of Highland Park, and Joel Schechter of Vernon Hills at the Les Turner ALS Walk4Life