Before announcing the recipient of a new award in her and her husband’s name, Les Turner ALS Foundation co-founder Bonny Gaffen took a moment to go off-script at the organization’s annual Hope Through Caring Gala on March 9.
First, she asked her fellow co-founders to stand. Then board members, past and present. She asked the scientists who investigate this debilitating disease and the clinicians who treat it to also rise. Then she asked the many patients in attendance to stand or raise a hand, as well as anyone who had volunteered at an event or otherwise supported the Foundation.
“By now, all of you should be standing,” she said to the nearly 450 people at the event, including 21 men and women living with amyotrophic lateral sclerosis, or ALS. Altogether, the group served as a visual representation of the teamwork that defines the Les Turner ALS Foundation’s mission to provide the best quality of care, local community support, and hope through scientific research to everyone affected by this disease.
Held at the trendy new Rockwell on the River venue in Chicago, the gala raised $617,000 to help the Foundation accomplish those important goals in partnership with the Les Turner ALS Center at Northwestern Medicine.
“We are all here because we are part of the Les Turner ALS family: those of us with ALS, those of us who love or care for someone with ALS, those of us who advocate for people with ALS, those of us who provide clinical care, and those of us who search for a cure for ALS,” said Andrea Pauls Backman, chief executive officer of the Les Turner ALS Foundation.
This year, the Foundation honored Mindy Evans-Williams, a patient and donor diagnosed with ALS in 1992, with its Hope Through Caring Award. Ms. Evans-Williams has received support and resources from the Les Turner ALS Foundation and, now in a position to give back, has chosen to generously donate to the Foundation to help others battling the disease.
“Instead of dwelling on how much of a struggle life has been for this single mom of a special needs child, Mindy immediately looked outward to her fellow ALS warriors and decided to pay it forward,” said Laurie B. Fieldman, LCSW, director of social services at the Les Turner ALS Foundation, who met Ms. Evans-Williams at a support group more than 20 years ago.
The program also included the presentation of the inaugural Harvey and Bonny Gaffen Advancements in ALS Award to Robert L. Sufit, MD, professor of Neurology and Surgery at Northwestern University Feinberg School of Medicine. A neurologist at the Les Turner ALS Center, Dr. Sufit has helped thousands of families affected by ALS through his clinical care and research. In fact, he designed and participated in some of the earliest and ongoing clinical drug trials in ALS and has published numerous papers on the natural history of ALS, end of life care for ALS patients, as well as the speech, swallowing, and electrophysiology of the disease.
“President Kennedy once said, ‘We choose to go to the moon and do the other things, not because they are easy, but because they are hard,’” Dr. Sufit remarked during his speech. “That’s what everybody here is doing. ALS isn’t easy.”
He reflected on the remarkable growth of the research, patient care, and training programs at the Les Turner ALS Center since he joined Northwestern in 1992, acknowledging everyone who has been a part of the Center: not just neurologists and scientists but also pulmonologists, speech and language pathologists, occupational therapists, genetic counselors, and the nurses and social workers from the Les Turner ALS Foundation who make up the support services team.“The real heroes are the people with ALS and their families, who live with ALS and volunteer in our clinical trials. All of our work depends upon them,” he said, to cheers from the audience—including whistles from one of his patients.
A Longstanding Partnership
The Les Turner ALS Foundation is named for Les Turner, who was diagnosed with ALS in 1976—when little was understood about the disease and patient resources were nearly nonexistent. A small group of Turner’s friends and family formed the Foundation in 1977, proclaiming that no one should have to go through ALS alone. Since then, the Les Turner ALS Foundation has been the leader in comprehensive ALS care in Chicagoland.
The longstanding partnership between the Les Turner ALS Foundation and the Northwestern Medicine academic health system dates back to 1979 when the Les Turner ALS Foundation established the first Les Turner ALS Research Laboratory. In 1986, the relationship was further cemented when the Foundation opened the Lois Insolia ALS Clinic, one of the nation’s first multidisciplinary ALS clinics.
Throughout its relationship with Northwestern Medicine, the Foundation has directly funded more than $27 million in research and clinical care. The Foundation also facilitates in-home support services to people living with ALS by a team of nurses and social workers, support groups, equipment loans, support service grants, and educational activities, helping people living with ALS and their families every step of their journey.
In 2014, the Foundation made a leadership commitment of $10 million to help establish the Les Turner ALS Center at Northwestern Medicine. The Center strives for a future without ALS by accelerating leading-edge research while providing life-enhancing treatment to people living with ALS. The Foundation continues to partner with Northwestern to raise $10 million to endow the Center in perpetuity.
For more information about supporting the Les Turner ALS Center, please contact Lauren Pedi at firstname.lastname@example.org or 312-503-4635.