A “Field of Dreams” for an ALS Cure
ALS patients “Ride for Life” at Stony Brook with hopes for a cure ‘blowing in the wind’; $160,000 donated to support the ALS Center of Excellence
STONY BROOK, NY, May 13, 2014 - The 6,000 pinwheels displayed on a Stony Brook University field represents the annual lives lost to ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s disease. The field of pinwheels is also symbolic of a growing theme of the annual Ride for Life and for Christopher Pendergast, a 21-year ALS patient, advocate and founder of the Ride for Life Organization. Pendergast, the ALS specialists at Stony Brook Medicine, and supporters of the Ride for Life envision that like the pinwheels, a cure for this fatal neurodegenerative disease is out there with an answer ‘blowing in the wind.’
“Hope is alive, and there is no doubt in my mind we will eventually find a cure. That’s why we press forward,” said Pendergast, at the “Ride for Life” Celebration and Remembrance Ceremony took place on the Stony Brook University campus on May 10.
The ceremony is the cornerstone event of the 12-day power wheelchair trek by ALS patients that ends in Manhattan on May 17. The Ride for Life, which raises awareness and funds for ALS research, began in 1998. During the ceremony, the Ride for Life donated $160,000 to Stony Brook’s Christopher Pendergast ALS Center of Excellence, the only ALS Association-certified center on Long Island.
“This day is about the Riders, the people who support them, those who provide their medical care, and the researchers who are working tirelessly to find a cure for ALS,” said L. Reuven Pasternak, MD, CEO, Stony Brook University Hospital, and Senior VP for Health Systems at Stony Brook Medicine. “We salute the courage of all the patients and remember those who have been lost due to ALS.”
“All of the pinwheels we see do represent the many lives taken because of ALS, but we see something more,” said Al Jordan, a Ride for Life committee member and Associate Dean of Student & Minority Affairs at Stony Brook University School of Medicine. “I am going to borrow a phrase. It is a ‘field of dreams’ with hope that we will soon celebrate a cure.”
Since its inception the Ride for Life has raised close to $5 million to fund ALS research and clinical services. Through the ALS Center of Excellence, Stony Brook clinicians and neuroscience researchers are conducting research to develop better targeted treatments and launch clinical trials of new investigative therapies against ALS.
“The Ride for Life is an amazing experience, and I hope to go the distance,” said Frank Wojcik, 52, of Commack, a patient at Stony Brook and first time Rider.
Diagnosed in January 2013, Wojcik said Pendergast inspired him to join the Ride for Life. He has learned more about the disease during his patient journey and thinks that as science continues to gain more knowledge about ALS, a cure may emerge at some point.
“Right now what has been most inspiring is the support along the way, especially all of the kids at the schools on Long Island. They give you so much energy, and hope,” added Wojcik.
This year a record number public schools are participating in the Ride for Life. According to Pendergast, more than 50 schools from East Hampton to Manhattan are taking part, some with donations directly from student efforts. An estimated 8,000 Long Island students this month are learning first-hand about the ALS Ride for Life cause.
Two ALS patients at the event were strong enough to walk the day’s trek onto the Stony Brook University campus. Clinton Strait, of East Northport, who continues to work as a project manager, said he felt inspired and would hopefully walk on other days during the Ride. Paul Weisman, of Bohemia, walked the Ride course for two days prior to the Stony Brook event.
On hand to support the Ride for Life and Stony Brook event were New York State Senator John J. Flanagan, Town of Brookhaven Supervisor Ed Romaine, and Suffolk County Legislator Kara Hahn.
The event concluded with the Remembrance Ceremony – when the names of 90 people lost to ALS – representing the number of minutes between deaths from ALS in the United States – were read aloud. As the gusts of a coming rainstorm picked up, the families and friends of patients stood around the pinwheel “field of dreams.” Family members then read their loved one’s name aloud, a bell was rung, and a balloon released into the air to honor each of them.
Christopher Pendergast (front row; second from left) presents $160,000 to support Stony Brook’s Christopher Pendergast ALS Center of Excellence during the Ride for Life ceremony. Holding the check: Rahman Pourmand, MD, left, Co-Director of the ALS Center of Excellence; and L. Reuven Pasternak, MD, CEO, Stony Brook University Hospital, and Senior VP for Health Systems at Stony Brook Medicine. Pictured, from far left: Kristie Golden, PhD, Associate Director of Operations, Neurosciences; Dennis Choi, MD, PhD, Professor and Chair, Department of Neurology, and Director of the Neurosciences Institute; Nurcan Gursoy, MD, Co-Director ALS Center of Excellence; Lorraine Danowski, nutritionist at the ALS Center; and Theresa Imperato, RN, ALS Center Coordinator. Also pictured are NY State Senator John J. Flanagan (upper right), Rider Frank Wojcik (next to Pendergast) and other ALS patients and their families.