Celebrating 30 Years: The Lois Insolia ALS Clinic at Northwestern

Mindy Williams, who was diagnosed with ALS in September 1992, receives assistance from John Powers from Hill-Rom, a manufacturer and provider of medical technologies and related services, at the Lois Insolia ALS Clinic.

The Lois Insolia ALS Clinic at Northwestern Medicine opened in July 1986 thanks to a generous gift from the James V. Insolia Family Foundation made through the Les Turner ALS Foundation. At the time, it was one of the first multidisciplinary ALS clinics in the country, dedicated to the total care and support of people with ALS, their families, and their caregivers and was the first ALS clinic in the Chicago area.

Andrea Pauls Backman, executive director of the Les Turner ALS Foundation 

Three decades later, the Lois Insolia ALS Clinic continues to receive support from the James V. Insolia Family Foundation and serve the Chicagoland community through the Les Turner ALS Research and Patient Center at Northwestern Medicine, which was established in 2014 with a $10 million commitment from the Les Turner ALS Foundation.

“As we celebrate 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,” said Andrea Pauls Backman, executive director of the Les Turner ALS Foundation.

Impact for Generations

During a visit to the Lois Insolia ALS Clinic, patients meet with members of the large, experienced multidisciplinary team, which includes five neurologists, two pulmonologists, and a team of experts that provides genetic counseling, occupational therapy, speech therapy, respiratory therapy, dietetic counseling, and the coordination of clinical trial studies. Clinic physicians and staff take the time to carefully explain the disease and current research to patients and their families. In addition, the team 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.

In addition to providing diagnostic, rehabilitative and support services to the ALS community, staff members at the Lois Insolia ALS Clinic share their knowledge with health care professionals at ALS conferences around the country and around the world. They are recognized by their peers for their unique expertise and dedication.

Scott L. Heller, MD, clinical associate professor of neurology at Feinberg and 1984 alumnus of the neurology residency program at Northwestern, was recruited in 1986 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. Today, the Clinic has grown immensely under the direction of Robert L. Sufit, MD, who is a professor of Neurology (Neuromuscular Disease) and Surgery (Organ Transplantation).

Dr. Scott Heller

“In 1986, it was a novel idea to create a multidisciplinary clinic like this,” Dr. Heller  said. “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.”

In addition to his service on faculty at Northwestern University Feinberg School of Medicine, Dr. Heller also has been a longtime Les Turner ALS Foundation board member, and is the vice president of medical services and chair of its Patient Services Committee.

“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,” said Dr. Heller. “The wide reach of our programs and the continued impact on our patients, their families, and the entire ALS community are most important.”

One of the most unique aspects 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 Home and Community Team at the Les Turner ALS Foundation, a group of experienced registered nurses and social workers, work closely together to ensure that patient needs are met from both a clinical and home support perspective. This unprecedented coordination of ALS care services contributes greatly toward improved quality of life for people with ALS.

Elmhurst resident Matt Toole was diagnosed with ALS in 2013, and today receives care from the multidisciplinary team at the Lois Insolia ALS Clinic within the Les Turner ALS Research and Patient Center at Northwestern Medicine. “The staff at the clinic is compassionate, professional, and invaluable to us as we travel this unpredictable journey of living with ALS,” he said. “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, continued: “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.”

Lois Insolia

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. Mr. 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 Center, which was later renamed as it is today.

Since Mr. 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.

Greg and Rosemary Insolia

“My father felt strongly that a multidisciplinary patient clinic for those living with ALS was critical in the Chicagoland area,” said 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.”

About the Les Turner ALS Foundation

The Les Turner ALS Foundation, founded in 1977, is Chicago’s leader in research, patient care, and education about ALS, serving the vast majority of people with ALS in the  area, offering help and hope when it’s needed most. One of the nation’s largest, independent ALS organizations, the Foundation allocates all funds to local research, clinical care, and support services for people with ALS in the Chicagoland area. The Foundation’s full spectrum patient service programs include in-home consultations, support groups, equipment loans, grants, and educational activities. 

Through the Foundation’s over 35 years of support of Northwestern Medicine and the establishment of the Les Turner ALS Research and Patient Center, the Lois Insolia ALS Clinic together with three research laboratories continue to lead the way to maximize collaboration and impact in the field of ALS. For more information, please visit lesturnerals.org or feinberg.northwestern.edu/sites/alsresearch.

“In 1986, it was a novel idea to create a multidisciplinary clinic like this. 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.”

- Dr. Scott Heller