Event will aid efforts of man battling ALS

Patrick O'Brien, 32,

son of Sayreville mayor, documents his struggle

BY MICHAEL ACKER

Staff Writer

SAYREVILLE -- While fighting for his life against Lou Gehrig's disease, Patrick O'Brien is documenting what time remains for him in the interests of helping others.

"My son is dying of Lou Gehrig's disease," Mayor Kennedy O'Brien told the Suburban.

A graduate of Sayreville War Memorial High School, Patrick, 32, was diagnosed last year with amyotrophic lateral sclerosis [ALS], commonly known as Lou Gehrig's disease.

Patrick and his film crew will be at the "Expresso Cafe" event at Starland Ballroom on Jernee Mill Road Monday evening to shoot for the documentary. The event, held annually by the Sayreville High School Film & Video Society and Music Department, will benefit the newly formed Patrick O'Brien Foundation.

"Expresso Cafe" is an evening of music, video, poetry and comedy by Sayreville students, Mayor O'Brien said.

"My son was in the first class for the film and video course," he said. "I am a proud and loving father, and this is just such a nice thing that [high school teacher] Susan Pellegrini is doing. Susan wanted my son to know that he made a difference."

Pellegrini said this, the second annual "Expresso Cafe," is about thanking Patrick for his contribution to the studio as a student at the high school.

"Patrick really is amazing in terms of his creativity and who he is as a person," Pellegrini said.

When Patrick's film won the New Jersey Young Film Makers Award, it brought about a change for the program, and students at the school have won first prize in that award on six occasions.

"The students realized that they had freedom to be creative," Pellegrini said. "Patrick is very unique. He has incredible vision, he is very funny, extremely outgoing and effervescent. He's inspired so many people with his personality."

Pellegrini thanked Starland Ballroom owner Tony Pallagrosi for allowing use of the venue without charge.

"He has been extremely supportive of the event and we are very grateful for that. I just want Patrick to know what a difference he made here. I want him to know that," Pellegrini said.

ALS proves fatal within an average of two to five years, according to Mayor O'Brien.

"It will be two years this March," he said, "and his muscles are 90 percent paralyzed. It is that rapid. He cannot feed himself. As a father, for the second time in his life, I clothe him, I feed him and I bathe him."

The disease results in the progressive degeneration of the nerves and muscles responsible for voluntary movement, according to the Patrick O'Brien Foundation's Web site. It destroys the body's motor neurons or nerve cells, resulting in the individual losing the ability to walk, speak, swallow and breathe.

"ALS is not a mainstream disease," Mayor O'Brien said. "It costs $100 million to do one drug test. That is how much one trial costs, so they do not know the cause and they do not know the cure. I have attended wakes for children and I have tried to give comfort to the parents, and nothing can prepare you for it."

Karen Surratt, the mayor's assistant, said caring for Patrick has been a family effort for the O'Briens, adding that Patrick has a sister who is a doctor helping him with insurance and medical issues. Another sister acts as his primary caretaker in Maryland.

"The mayor visits him weekly," Surratt said. "He leaves Friday, late afternoon, so he can spend most of Saturday taking care and spending quality time with him, so the whole family has rallied around Patrick."

The foundation has given Patrick a sense of purpose, Surratt said.

"He wants to bring the disease to people's consciousness," she said. "Because he is very computer-savvy, and modern technology gives him the ability to work with the computer, this was his way of helping."

Patrick is chronicling his experience with the disease, as it limits his mobility over time.

"He was born with that gift," Mayor O'Brien said, "with the gift of being an artist."

Patrick not only won the New Jersey Young Film Makers Award once in high school, but he won it two more times while attending the School of Visual Arts in New York, where he was a film major, Mayor O'Brien said.

Kyle Grooms, a stand-up comedian featured on Comedy Central's "Chappelle's Show," will perform on Monday, as well as the faculty band, the Secondary Eds and the student band Humongous Fungus.

Tickets for "Expresso Cafe" can be purchased online at www.starlandballroom.com, at the venue itself and at the high school. Doors open at 6:30 p.m. and the event will begin at 7:30. Tickets are $8 in advance or $10 at the door.

Donations to the Patrick O'Brien Foundation can be made on the Web at www.patrickobrienfoundation.org.

Mayor O'Brien is typically at Borough Council meetings on Monday nights, but this Monday he will join hundreds of others in raising money for the cause of helping those with Lou Gehrig's disease.

"I am going to spend the time with my son," Mayor O'Brien said.