When it opened in July 1986, the Lois Insolia ALS Clinic at Northwestern Medicine was one of the first multidisciplinary ALS clinics in the country — the very first in the Chicago area — dedicated to the total care and support of people with ALS, their families and their caregivers.
Scott Heller, MD, ’84 GME, was recruited to serve as the first director of the Lois Insolia ALS Clinic. At that time, it was a three-person operation — one clinician, one nurse coordinator and one clinician-scientist.
“In 1986, it was a novel idea to create a multidisciplinary clinic like this,” says Heller, currently a neurologist at Northwestern Memorial Hospital and a clinical associate professor of Neurology at Feinberg. “Now, what was once novel has become the standard, state-of-the-art way to provide this type of care. We set the paradigm nationally and internationally.”
The clinic, now directed by Robert Sufit, MD, has grown immensely in its three decades. During a visit, patients meet with members of a large, experienced multidisciplinary team that includes five neurologists, two pulmonologists and experts that provide genetic counseling, occupational therapy, speech therapy, respiratory therapy, dietetic counseling and coordinate clinical trials.
Clinic physicians and staff take the time to carefully explain the disease and current research to patients and their families. The team also works with patients and families to address symptoms such as difficulty with speech and swallowing, weight loss, problems with sleeping, breathing and excess salivation, and difficulties with activities of daily life, mobility or pain.
Uniting ALS research, clinical care and education
In 2014, the Lois Insolia ALS Clinic became part of the newly formed Les Turner ALS Research and Patient Center at Northwestern Medicine. The center, created through a $10 million commitment from the Les Turner ALS Foundation, unites ALS research, clinical and education activities under one umbrella. This model supports collaboration between the clinic and scientists at Northwestern, including those working in Feinberg’s three ALS labs. All of these efforts are within the Institute for Translational Neuroscience at Northwestern Medicine.
Another unique aspect of the clinic is its relationship with the Les Turner ALS Foundation, which offers a continuum of care to ALS patients and their families. Clinicians and members of the foundation’s Home and Community Team, a group of experienced registered nurses and social workers, work together to ensure that patient needs are met from both a clinical and home support perspective.
“Going forward, we seek to continue maximizing our efforts in research, clinical trials and patient care, and services through the Les Turner ALS Research and Patient Center at Northwestern Medicine,” says Heller, who is a longtime Les Turner ALS Foundation board member, vice president of medical services and chair of its patient services committee. “The wide reach of our programs and the continued impact on our patients, their families and the entire ALS community are most important.”
Elmhurst resident Matt Toole was diagnosed with ALS in 2013, and today receives care from the team at the Lois Insolia ALS Clinic. “The staff at the clinic is compassionate, professional and invaluable to us as we travel this unpredictable journey of living with ALS,” he says. “The team approach at the multidisciplinary clinic enables us to meet with dedicated specialists to support our healthcare needs in a comprehensive and efficient way.”
Matt’s wife, Karen, adds, “The communication between the team at the clinic and our home and community services team from the Les Turner ALS Foundation has been instrumental in getting things done. This seamless, transparent communication team has given us the peace of mind to know that no matter what is going on everybody is on the same page and up to speed on the situation.”
Northwestern Partners: The Les Turner ALS Foundation and the Insolia Family
Shortly after losing his wife, Lois, to ALS, James Insolia and his family attended a Les Turner ALS Foundation support group. Insolia was moved with a deep sense of empathy for other families living with ALS. As a result, he partnered with the Les Turner ALS Foundation in 1986 to establish the Lois Insolia ALS Clinic.
Since Insolia’s passing, his son Greg and his sister Gia have continued his tradition of support through the James V. Insolia Family Foundation. Additionally, Greg and his wife, Rosemary, have been longtime active supporters of the Les Turner ALS Foundation. Since 1986, the Insolia family has contributed more than $1.25 million to continue the legacy of Lois and to provide the highest level of care for people with ALS.
“My father felt strongly that a multidisciplinary patient clinic for those living with ALS was critical in the Chicagoland area,” says Greg Insolia. “It is an honor to have helped establish and provide that resource for over 30 years through the Les Turner ALS Foundation while carrying on the memory of my mother. Our family looks forward to continuing this partnership for years to come.”
“After 30 milestone years, we are humbled and honored that the Lois Insolia ALS Clinic not only provides the pinnacle of care to those with ALS, but also remains the only fully multidisciplinary ALS clinic in the Chicagoland area,” says Andrea Pauls Backman, executive director of the Les Turner ALS Foundation.