Sayreville man films life with ALS
 

Sayreville man films life with ALS
Home News Tribune Online 11/8/06
By JOHN MAJESKI
STAFF WRITER
jmajeski@thnt.com
SAYREVILLE — To understand the impact of artist Patrick O'Brien's disease, think of a candle.

http://patrickobrienfoundation.org/

"It slowly burns and melts away your ability to move, to walk," he said of amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's disease. "But inside, your creativity burns strong."

Indeed.

The former Sayreville resident, confined to a wheelchair after being diagnosed with the incurable ailment in May 2005, has turned his fate into the inspiration for what he dubbed his "life's work": a documentary film detailing his struggles with the "ugly, spirit-punishing, insidious illness."

O'Brien, 32, was the subject of a benefit show Monday at Sayreville's Starland Ballroom, where he spoke of the vulnerable characters that have appeared in many of his previous films. The Maryland resident said it's as if the documentary turns him into someone he always wanted to bring to the screen.

"When I was diagnosed with a disability I, in a sense, was already familiar with the world of the disabled," he said.

More than 400 people showed up at the Jernee Mill Road venue Monday and raised $3,580 for the Patrick O'Brien Foundation, which promotes awareness of ALS. The evening of music, video, poetry and comedy was put together by the film and video society and the music department at O'Brien's alma mater — Sayreville War Memorial High School.

"This is a gift for Patrick from me," said teacher Susan Pellegrini, who noted O'Brien was part of the first television-studio class at the high school. Pellegrini said a student film O'Brien made back then garnered a first-place award in a festival and opened doors for future students.

"The judges were blown away," she said. "It truly allowed freedom for students that came after him. It showed them what was possible, and it showed they could do their work freely."

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. According to the ALS Association, about 5,600 people in the U.S. are diagnosed with the disease each year. The life expectancy of an ALS patient is usually two to five years from the time of diagnosis.

O'Brien's documentary, "October 5, 1974" — the working title is the filmmaker's birthday — details the patient's struggles, including footage from a recent operation.

"Some of it is difficult to watch," said Pellegrini, who showed clips from O'Brien's older works along with a snippet from the film-in-progress Monday. "I think it's amazingly courageous."

O'Brien, the son of Sayreville Mayor Kennedy O'Brien, said the 75-minute feature film may be released in 2008. The total cost for the project is estimated at $250,000, he said, and funding is a constant concern.

Monday's fundraiser may be included in "October 5, 1974" along with a recent trek across New Jersey from Washington Crossing, Pa., to Asbury Park by O'Brien and his supporters.

"The goal of the film . . . is to reach the truth and ultimately move people in such a way that they go to vote and carry with them a piece of the film," he said, referring to the debate on stem-cell research.

The Patrick O'Brien Foundation is releasing excerpts of the film-in-progress on Jan. 1. DVD orders made before the end of the year are $25 each, those made Jan. 1 or after cost $40 each.

For information, visit www.patrickobrienfoundation.org.

http://patrickobrienfoundation.org/

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