BY BETHANN KISTNER
Cliff Maus woke up one morning with slurred speech. He and his wife knew something was wrong, but neither imagined he would be diagnosed with amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease. After several appointments with physicians who specialize in neurological disorders, who all agreed that he had ALS, Maus was referred to Upstate’s ALS Research and Treatment Center.
Maus, a retired Canandaigua police officer, was diagnosed with a rare form of ALS called progressive bulbar palsy, which impacts the throat and lungs. Globally, 20 percent of ALS patients who have trouble with speaking and swallowing at diagnosis are classified as bulbar-onset. These patients lose their abilities to speak very early in the course of the disease. Most other ALS patients develop speech loss as the disease progresses.
Maus cannot speak, but he communicates using his iPad. Motivated to help find a cure, he enrolled in a clinical trial at Upstate. He also organized a Frank Sinatra tribute in Geneva last winter and used $6,500 in proceeds to open a Voice of PALS (persons with ALS) fund through the Upstate Foundation to benefit ALS treatment and research at Upstate.
In addition, Maus’ friends at the National Barrel Horse Association held a fundraiser in June at the Seneca County Fairgrounds in his hometown of Waterloo, raising $1,200 for the Voice of PALS. Supporters are planning a golf tournament for summer 2017.
“With a disease that has no cure or treatments to stop the progression, research is our only hope,” Maus says.
Neurologist Eufrosina I. Young, MD, directs the center and leads a study using transcranial magnetic stimulation to diagnose ALS. That research also involves Upstate’s department of neurosurgery.
Voice of PALS was established through the foundation’s Grateful Patient and Family Program, which identifies and establishes relationships with patients and their families who are grateful for the care provided by Upstate health care professionals.
“What Cliff Maus is doing to help Upstate’s ALS clinic is more than meaningful. It is brave and selfless,” says Eileen Pezzi, vice president for development at Upstate. “We are extremely grateful for patients like Cliff who make a difference in research and patient care.”
To donate to this fund, click here or contact the Upstate Foundation at 315-464-4416.
This article appears in the fall 2016 issue of Upstate Health magazine.