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By Liza Frenette
The ice bucket is just another challenge for Christopher Pendergast. After all, most people live about 24 to 36 months with ALS, or Lou Gehrig’s disease, and he’s lived 21 years -- among only 5 percent of those with the disease who smack down the scarcity odds.
This retired teacher spends his days in a wheelchair, has lost the use of his hands, is outfitted with a ventilator and relies on sensors in his headgear to operate most any motion. If you think some ice cubes pouring down his head into his wheelchair are going to scare him, think again. Not only did he take the challenge, he brought together supporters to do the same at a community “Ice ALS” event in late August in Mt. Sinai on Long Island. Five hundred people showed up and they raised $5,000.
“We had a tsunami! I was happily and literally buried under a wall of water,” said Pendergast, a longtime member of Northport United Teachers. “We threw together an incredible event.”
By tagging onto the wildly successful social media “ice bucket challenge” campaign, he’s continuing his quest to raise money for research and treatment of Amyotrophic Lateral Sclerosis through his organization, Ride for Life, Inc. -- encouraging people to “bold the cold” and take on the “Icing ALS” challenge.
“The ice bucket challenge is sweeping the Internet. Since imitation is the sincerest form of flattery, Ride for Life has undertaken the “Icing ALS” challenge. We are looking for supporters to accept a challenge from us so we can finally ‘ice’ ALS by finding a cure,” he reports on his site. This new ICE ALS campaign has already raised $45,000 for Ride for Life, Inc. -- which takes on ALS, a progressive, neurodegenerative disease that puts the body in lockdown -- through research, clinical trials, and supporting clinics.
“The schools have begun icing big time,” he said. In some cases, it’s for a specific memory: Herricks Middle School faculty on Long Island did an ICE ALS in memory of Tom Coleman, who passed away from ALS two years ago, Pendergast said.
In most cases, those taking the challenge are doing it so those with ALS can make many more memories to come. “Teacher unions, clubs, scholastic teams . . . have taken up the challenge to Ice ALS,” Pendergast said.
While ALS has made his body an uncomfortable carrier, he remains comfortable in schools. Education remains the pith of Pendergast’s career. Although his teaching career was hacked into by ALS, Pendergast still returns to classrooms and school auditoriums to present assemblies. Even while now requiring around-the-clock outside medical care for the first time in his home, Pendergast still suited up this year for 48 assembly presentations at 43 schools and colleges on Long Island and in NYC. Retired teacher Barbara Brown, North Babylon Teachers Organization, coordinated the outreach for this program.
Pendergast figures that he reached an estimated 10,000 students with his message about “meeting the challenges of life.” With limited use of his vocal cords, he gives talks with the help of his wife, Christine, a retired teacher from Port Jefferson Station TA who is his primary caregiver and cheerleader.
Many of the students who hear his talks then show up later to walk the walk. Students, teachers, administrators and School-Related Professionals gather outside schools to cheer him and other riders each year along his route on the spring Ride for Life, which he started in 1998, five years after his diagnosis. Like him, some riders are in wheelchairs; most are pedaling bicycles. This year he traveled May 5-17, beginning in East Hampton. And this year, for the first time, donations from the school community nudged out major corporate sponsors, 38 percent to 37 percent respectively.
“It made me proud as an educator,” said Pendergast. Approximately 30,000 students/staff from 53 schools greeted the riders this year, and they raised $85,000. “The numbers,” he said, “boggle my mind.”
Other numbers are just as boggling. According to the ALS Association, about 20 percent of people with ALS live five years or more, and up to 10 percent will survive more than 10 years. Five percent will live 20 years. There are even some people in whom ALS has stopped progressing, and small number in whom the symptoms have reversed. A person with ALS dies every 90 minutes.
This teacher describes his illness as similar to being “sealed in a glass coffin.”
Pendergast believes fervently in research and helps fund it through his programs. Ride for Life, Inc., partnered with the Simon Foundation to equally fund a $1 million neuroscience program bringing human clinical ALS trials to SUNY Stony Brook University on Long Island, as well as initiating basic research into the disease over a five-year period that began in 2012.
His is a familiar face at SUNY Stony Book. Ride for Life has offices there, and an on-site ALS clinic bears his name. Previously, care for ALS patients on Long Island was only available in Manhattan, until this guy came along with hope and a mission. The 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 $602,000 to the clinic for operational expenses.
Ride for Life scholarships help students en route to college whose families have been wracked by a parent with ALS. The scholarship program is funded in part by local teacher unions.
“(NYSUT President) Karen McGee has continued the NYSUT tradition of jointly requesting local presidents to support the scholarship program. Scores of locals have responded positively, enabling the program to continue,” Pendergast said.
Its outreach has many tiers. Primary caregivers to a family member with ALS can apply to Ride for Life for a respite care grant. The organization also now has on hand a fleet of five specially equipped vans along with many power wheelchairs to loan out to patients as part of its Mobility Program. Through the committed work of Pendergast and a team of volunteers, Ride for Life has raised $5 million since it was formed in 1998.
Pendergast has done all this by turning up in his wheelchair at schools, on highways, in legislative offices and in research clinics. Three times, he rode from Yankee Stadium -- where baseball legend Lou Gehrig played until he was felled by ALS -- to Washington, D.C. Now, rides are in the New York City, Long Island area.
Keeping as busy as he does means relying on people to help him with all of his functions, including typing - which is how he keeps spreading his good word. He faces a typist, mouths words, and the typist inputs them. One typist volunteer is a retired school secretary who shows up every Tuesday. Eventually, he will have to rely on augmentative communication, which uses a sophisticated camera attached to a special computer that tracks the movement of his pupil, determining which key he is staring at. Keystrokes can also be measured by pressing a switch, such as the one he has next to his knee. Pendergast calls the technology an “absolute lifeline,” but one that is tedious and slow, which is why he still relies on personal helpers to type.
“I am reaching a point of no return where it will be my only method to communicate,” he said. “Already, I am unable to be understood by most, and by no one if in a noisy environment.”
When he wheels in to classrooms and auditoriums, he tells students, usually through his wife’s voice and his words, “I’m going to ride until I find a cure or I will die trying. I will not give up.” He encourages students who are facing a parents’ divorce, bullying, academic failures, drinking, drugs or other “dark places” not to give up. When he began losing functions to ALS, his emotions were ravaged as well. He was also frustrated by lack of medicine or awareness.
And one day his mind turned, just as helpers now turn his body. He decided to dedicate his life to education, treatment and research toward finding a cure for this jagged, relentless disease.
His choice, he said, was “to stop dying from ALS and learn to live with ALS.”
Pendergast values the awareness that is erupting with the social media ice bucket challenge, and also hangs on to the prize: generating critical research money to find a cure for ALS. However, the Ride for Life “Icing ALS” challenge does not have a dollar amount attached, unlike the social media $100 blast, because he said the supporters he’s encountered are “young to old, elementary to collegiate, part-timers to fully employed, career beginners to masters in their field.”
Donations can be made at http://ride-for-life.org/. Go to “Support” then “Donate online” and state “Icing ALS” in the comments, including what you did, etc. If you are honoring someone, include their name in the comment section.