SUNY Upstate clinic specializing in Lou Gehrig’s disease is honored for excellence


SYRACUSE, N.Y. —The ALS (Amyotrophic lateral sclerosis) Clinic at SUNY Upstate Medical University has been named a Certified Center of Excellence of the ALS Association.

It is now one of only 32 clinics in the nation to have received center of excellence status from the ALS Association. The center, which works closely with the Association’s Upstate New York Chapter, provides multidisciplinary care for people with ALS and conducts clinical trials on experimental therapies for ALS.

Last year, the center saw 181 new patients and currently treats more than 300 individuals with ALS. Patients come from all across the state and from Pennsylvania.

“The designation enhances the reputation of the facility and will attract people with ALS for clinical trials,” said Jeremy Shefner, M.D., Ph.D., SUNY Upstate professor and chair of the Department of Neurology, who serves as medical director of the ALS Clinic and director of the Clinical Neurophysiology Laboratory.

The ALS center staff includes an experienced team of professionals, all of whom are dedicated to multidisciplinary patient care. The ALS team provides specialized medical care to patients, as well as occupational, physical, speech and language, dietary and respiratory therapy. Social services and counseling also are provided, as well as support groups for patients and their families. This collaborative environment provides patients with a comprehensive evaluation and treatment plan designed to maximize function and quality of life.

Shefner, an active clinical investigator who has designed and implemented ALS clinical trials since 1992, founded the center in 1996. His interests also include neurophysiological assessment of motor unit loss in both patients and animal models of ALS.

“The certification of this clinic would not have been possible without the hard work and dedication of Dr. Shefner and his wonderful team,” said Sharon Matland, the vice president of patient services for The ALS Association.

The association, through its TREAT ALS (Translational Research Advancing Therapy for ALS) initiative, has put in place a partnership with the North East ALS Consortium, which Shefner co‑founded in 1995, to provide a network of clinical investigators that will be ready to test promising compounds in people with ALS, and provide opportunities for training of newer investigators to participate in clinical trials for ALS.

“My overall goal is to see ALS care improved by the use of new and more efficient therapies,” said Shefner, who completed a fellowship in clinical neurophysiology and neuromuscular disease at the Brigham and Women’s Hospital in Boston, where he directed the ALS clinic and participated in multiple industry‑sponsored ALS clinical trials. “Lacking that development, the best way we can take care of people with ALS is to use the multiple specialists that an ALS Association Certified Center can offer,” he said.

“It is very gratifying to see a clinic develop so that we can provide high quality comprehensive care to patients with ALS. Over the last five years, we have steadily increased the number of patients we serve, and hope that certification by the ALS Association will allow us to continue to provide a high level of care to patients in Central New York,” Shefner said.

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

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