Reliable forecast: raising funds helps ALS research

No matter what the weather will be on April 17, here is a reliable forecast: the “ALS Ride for Life” Bike Trek event will bring together bicyclists to raise serious money to combat this crippling disease. Bikers will ride 10 mile, 25 mile, 50 mile, or 100 mile courses, depending on muscle power and mojo.

Bicyclists will be turning spokes with speed from 6:30 am to 6:00 pm on that Sunday in the annual fundraiser started by retired public school teacher, Chris Pendergast. All routes start at Campus Bicycle at SUNY Stony Brook and end at the Bench Bar and Grill for an after-party.

But that’s not all.  The ALS Ride for Life, the umbrella organization, will also begin its annual journey, The Ride Event , on May 9  on Eastern Long Island.  There will be no bicyclists at this one — but rather, people in wheelchairs. The Event will last an impressive 12 days.

“Each year, we plot a different course depending on schools wanting to host a stop,” said Pendergast. “Often we are escorted by student and fire trucks in their respective communities.”

Amazingly, Pendergast’s plans for the crew of wheelchair riders include stops at five dozen schools, through Suffolk and Nassau counties, Brooklyn, Manhattan and the Bronx.

Students and educators will be stepping outside their schools as the riders pass through, cheering them on and donating money along the way. The riders have a very large fan base — one built on their connection with students, with awe for the sheer endurance level of their 12-day journey, and with the desire to help eliminate ALS.

For the past 19 years, ALS patients have ridden their wheelchairs, first from Yankee Stadium to Washington D.C., then from Montauk Point (the tip of Long Island) to Manhattan and, finally, all around the Metro area.

Last year, there were eight riders, including several teachers. This year the participants will again ride from school to school. Sometimes they will get into  vans for part of the route. Many will be powering motorized wheelchairs.

In the past, Pendergast has met with lawmakers along the way to educate them about ALS and the need for funding. He’s also met with thousands of students. They know his face, and they know his story: He hosts dozens of school assemblies each year to talk with students about meeting the challenges of life. In their world, that might mean finding their way through a family problem, being bullied, academic obstacles, friendship and relationship troubles, or parents divorcing. In his world, it has meant taking on the Leviathon disease ALS, or amyotrophic lateral sclerosis.

His connection with students is seasoned. Through the support of his colleagues and advocacy of his union, the Northport United Teachers, Pendergast was able to continue working for awhile even after being diagnosed with ALS.  Since retiring, he has devoted years to raising money for research into the crippling disease and helping people find treatment. A clinic bears his name at SUNY Stony Brook. The Stony Brook University Neuromuscular Disease and Christopher Pendergast ALS Center of Excellence is an ALS Association Certified Center, where patients  with neuromuscular disorders can get diagnosed and treated.

Both The Ride Event and the Bike Trek are major fundraisers.

For The Ride Event, corporate sponsors, individuals and school communities contribute to the cause.

Pendergast started the umbrella organization ALS Ride for Life in 1998, five years after his diagnosis.  In addition to the bike ride and wheelchair event, other fundraisers are hosted by Ride for Life. The organization has generated about $6 million, Pendergast said, but can claim about $7 million, including money donated on their behalf by foundations and supporters.

In 2015, events clustered around the 10-100 mile Trek raised $269,000 total. For the year, $467,000 total was raised.

The ALS Ride for Life organization also provides annual scholarships to high school seniors going on to college, focusing on those students who have a family member  who has or had ALS. The organization also allocates some funding to provide respite for those taking care of someone with ALS. Money is primarily raised for research and treatment.

For years now, confined to a wheelchair and with physical  limitations that render him reliant on sensor in his headgear and the help of aides, Chris has reached out in fundraising efforts ranging from golf tournaments to the wildly popular social media craze,  the ice bucket challenge. Chris tagged his own event “Bold the Cold.”

Today, while admitting he is getting more challenged from the ALS, Pendergast is also busy getting the hundreds of details ready for the ride, along with the help of staff and volunteers at the Ride for Life office. A wheelchair, headgear, sensors and a respirator are just some of the tools he relies on to maneuver through his days.

Never underestimate this man.  ALS, or Lou Gehrig’s Disease, is a progressive, neurodegenerative disease and most people stricken by it live 24 to 36 months. Pendergast has lived 23 years with the all-encompassing disease. While suffering through continual losses, he and his wife, Christine, a retired teacher from Port Jefferson Station TA, doggedly work to raise awareness and  funding for research.

For more information, contact Kym Sgrignoli,Ride For Life, Inc., rfloffice21@aol.com, 631-444-1292.

One Comment

  1. Steve Zahurak May 26, 2016 at 8:38 pm #

    Liza,
    My email to you regarding the field trip that we discussed in Troy did not go through. I will try to contact you Friday afternoon or Monday.
    Steve

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