January 2011 Issue
December 20, 2010

Finding life's work — on borrowed time

Author: Liza Frenette
Source: NYSUT United
Caption: NYSUT President Dick Iannuzzi, left, has praised Chris Pendergast for his leadership in the fight against ALS. He accompanied Pendergast and his wife, Christine, to Stony Brook University Medical Center last month when an ALS clinic was renamed in Pendergast's honor. Photo by Kevin Peterman.

The wheelchair was expected. And the headgear to hold the ventilator. The surprise was how they became transparent, unseen, because of the clear blue eyes full of hope — the eyes of a man who has lived beyond all reasonable expectations.

Chris Pendergast has Amyotrophic Lateral Sclerosis, or its most common name, Lou Gehrig's disease, a fatal condition that can claim a life in two to five years. Pendergast has survived ALS for 17.

A member of United Teachers of Northport, Pendergast found his life's work in the retirement he never planned on, laboring tirelessly to help himself and thousands of others who have ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

His efforts to raise money for research, grants and comprehensive services for ALS patients were recognized last month when the ALS Care Center at SUNY's Stony Brook Health Sciences Center was named in his honor.

Pendergast has raised close to $4 million for ALS research and grants through events held by Ride for Life, Inc., the organization he founded.

"The work has only begun," he said. "Every 90 minutes someone dies from ALS."

Pendergast, who was first diagnosed in 1993, works with support from unions, volunteers and several assistants. His wife, Christine, a retired teacher and former president of Port Jefferson Station Teachers Association, is his primary caregiver.

His office is a rabbit warren of halls, below ground in space donated by SUNY Stony Brook HSC. His real place, however, is above ground.

The newly named Christopher Pendergast Center for Excellence provides medical treatment, rehabilitation techniques and psychological support, occupational, physical and respiratory therapies, nursing, speech pathology, social work and nutrition. Ride for Life has donated more than $400,000 to the clinic.

"Chris Pendergast has not only led the fight against his own disease, but has provided leadership in the union movement as well," said NYSUT President Dick Iannuzzi.

"Like those involved with ALS, teachers and unionists all over New York have benefited greatly from Chris' demonstration of leadership and determination in the face of adversity. NYSUT is honored to support his efforts," he said.

It's amazing, his tenacity. He just doesn't quit," said Kathy Southerton, president of the Stony Brook HSC chapter of United University Professions and a recent NYSUT Local Action Project participant. UUP members are among the health care professionals who provide services in the ALS clinic, including Dr. Rahman Pourmand, clinic director and Pendergast's own neurologist for the past six years.

"He's an inspiration, not only for the patients and the families, but even for me as a doctor," Pourmand said.

Comprehensive care helped Pendergast right from the beginning of his illness, as did the support of his union sisters and brothers in helping him continue to teach during the early stages of his ALS.

"My union was absolutely awesome in helping me," Pendergast said. The UTN advocated to get him an assistant in his classroom, and administrators were supportive.
"That intellectual exchange between a learner and a teacher is what is important in the classroom. While my body was falling apart around my mind, my mind remained sharp," he said.

For three years, colleagues, custodians, administrators, secretaries and even parents took turns driving him to school. They put together a book, "Driving Chris."

Pendergast's most well-known marker is Ride for Life, an organization that raises money for the clinic, grants and scholarships, and has already sent $1.5 million to institutions for ALS research.

Riding his wheelchair like a knight on a horse, Pendergast has charged down roads from Montauk to Columbia University in Manhattan, where Gehrig went to college. This year, it took him 10 days, with the help of police escorts, caregivers, high school students and other ALS patients who each rode for a day. "We've lost 50 people who went on the rides with me," he said.

He once spent 16 days traveling from Yankee Stadium to Washington, D.C., where en route he asked President Bill Clinton to amend Social Security laws so patients with ALS don't have to wait a year to receive disability. "Maybe half would die before they got one penny of their money," he said. In 2001, the waiting period was waived.

Along his journeys, students present him with donations. "They're the cheerleaders," said his wife, Christine.

Ride for Life presents college scholarships each year to students whose lives have been affected by ALS. The organization has given out $40,000 in scholarships to date; $7,000 more will be awarded in May.

One recipient is Ashley Scutari, who was awarded a $2,000 college scholarship in 2006 after losing her father, Frank Scutari, to ALS. Her mother, Sayville TA member Cathy Ann Scutari-Thorvaldsen, met Christine Pendergast at a support group in 1994. She lost her husband, a police officer, five years later.

"When my husband was sick we'd have to go into the city, to Columbia Presbyterian," said Scutari-Thorvaldsen, a middle-level science teacher. "There was no facility on Long Island. It never existed." Pendergast's fundraising and persistence propelled the creation of the Stony Brook clinic.

Each year Scutari-Thorvaldsen solicits her colleagues for contributions for the Educators Cup golf fund-raiser sponsored by Ride for Life.

NYSUT, a stalwart supporter of Ride for Life, honored Pendergast at the 2008 Representative Assembly for his work, "and it is inspiring to see he's still championing this cause," said Kathleen Donahue, NYSUT vice president.

An avid outdoorsman, Pendergast first went to his doctor for unexplained muscle cramping and loss of balance. His doctor told him to eat healthier and exercise regularly.

Repeated falls led him to a neurologist, who said the three letters — A-L-S — that would change his life forever. Pendergast was "stunned."

"What compounds a difficult, difficult reality is the fact that there will be no hope," he said somberly. "Even the most fierce of cancers has Hail Mary chemotherapy."

He has long stopped teaching and is now assisted during daytime hours four days a week by a home health aide. "I do not consider myself sick. I consider myself disabled," he said. "I get up every day and try to live the same kind of life everyone else leads, except I have a tremendous amount of help."

No longer able to move his fingers, he relies on sensor pads in his headgear to move his wheelchair. His computer at home is eye-controlled through an infrared camera attached to his monitor. Once he loses his ability to talk, it will speak for him.

And so will his legacy.

In 2009, Congress passed a law Pendergast and the national ALS Association long advocated for that creates registration for people with ALS with the Centers for Disease Control. Funding for medical research is motivated by numbers. Current statistics show ALS affects about 30,000 people in the U.S., with 5,000 new cases every year.

"It really sucks that I have ALS," said Pendergast. "I hate it. But that is not going to determine whether I'm happy or not."