Maraesa, my Dad and I were guests at an ALS event where Springsteen and Bon Jovi performed and also where I got a standing ovation from the crowd when I was introduced and did a lap around the theater in my chair. It was quite the experience.

They were very strict with tickets or else I would have invited everybody. The night rocked tho…. and rocking out is good for the soul…..;-] The event in Redbank, New Jersey at The Count Basie Theater held 1,500 people and sold out in 3 minutes. 500 promotional DVDs were distributed.

We want to thank Terry Magovern who produced the benefit on behalf of his late fiancee, Joan Dancy, who passed away from ALS and whose dying wish was to help people with ALS and their families.

Photographer: Jon Thoma

We have been approved by the IRS as a non-profit. Patrick O'Brien Foundation was founded in 2006 and operates as a 501(C)(3) non-for-profit organization. Donations are tax-deductible to the fullest extent allowed by law.

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.

"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.

View article at www.thnt.com

The Patrick O'Brien Foundation is a 501(c)(3) non-profit dedicated to promoting awareness of a terminal neurodegenerative disease, Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig's disease).

It is established in honor of Patrick Sean O'Brien - an artist diagnosed with ALS at the uncommonly early age of 30.

Patrick's current work is filming a documentary of his journey with ALS, as it unfolds across his body. By channeling his energies towards the completion of this film, Patrick hopes to inspire others to keep moving through their own adversities.

The Patrick O'Brien Foundation is releasing an unconventionally voyeuristic DVD highlighting selected excerpts from Patrick's film in progress. In an effort
to build awareness of this devastating disease, the Foundation is releasing a limited number of Patrick's DVDs on January 1st, 2007. All pre-orders made
before December 31 cost $25, after December 31 the cost is $40.

Please learn more about the Patrick O'Brien Foundation at www.patrickobrienfoundation.org. The website is a journey of its own - replete with film footage, photo essays, and updates on Patrick's voyage.

Please take this opportunity to order your DVD on-line, and get the word out with your own DVD House Party.

SAYREVILLE, NJ – The Sayreville High School Film and Video Society along with the school’s music department will present the “Expresso Café,” an evening of music, video, poetry and comedy.

The event, scheduled for Monday, November 6 at 7:30 p.m. at Starland Ballroom at 570 Jernee Mill Road, will benefit the Patrick O’Brien Foundation (www.patrickobrienfoundation.org), which raises awareness of ALS, otherwise known as Lou Gehrig’s disease.

Kyle Grooms, a stand-up comedian who has been featured on Chappelle’s Show and other shows on Comedy Central will perform at “Expresso Café.” Other acts expected to perform include the high school’s faculty band “the Secondary Eds,” the student band “Humongous Fungus” and many other local talents of all ages.

The event has been co-organized by the Starland Ballroom and Sayreville High School. Tickets are $8 in advance or $10 at the door. Tickets are being sold at the high school, Starland Ballroom and on the venue’s website (www.starlandballroom.com).

With Autumn in full bloom and our favorite holiday [Halloween] upon us, shooting continued on the film over the past two days. The weather was perfect: Sunny and in the 70's. The shoot consisted of showing 24 hours in the life of someone with ALS. In this case, Patrick's life in Maryland living with his 3 Nephews, 1 Niece, older Sister, Brother-in-law and housekeeper. Yesterday, dressed as Dr. No from James Bond, Patrick took his nephews trick or treating and later played charades. In addition to keeping a visual record of the experience and effects of ALS, Patrick has also been recording his voice, key words and phrases for a special device that will speak for him later. Footage from the shoot will be online within the next few weeks. Submit your e-mail below, to be updated when new promo films are released online. Thanks!

The Patrick O'Brien Foundation is pleased to announce the completion of two new segments in the film [seen here as short promos]: "Adaptation" & "Advocacy". Both of these pieces of the film were made possible as a direct result of support we have recieved from people around the world and by viewers like you. Thank you. However, as far as we've all come, our work is not done. Funds are needed to finish telling Patrick's story. ALS does not pause, so while he can, Patrick is asking those who are able: Please continue to spread the word, to donate and help the POB Foundation complete this landmark motion picture.

We would like to thank Todd and Miguel from Juxt Interactive for donating their web design services in the creation of The Patrick O'Brien Foundation website. We would also like to thank Jason Kristofer for creating the Foundation's Logo-mark, for connecting us with Juxt Interactive and for his ongoing support of the Foundation. Thanks goes to Mike Cina, who, along with Jason, has helped art direct and creativly shape the Foundation's website and forthcoming "Promos DVD". We couldnt do it without you guys. Thank you. Also a thanks goes to Ben Harben, who has donated his skills to keep this website up to date and running smoothly.

What a long, strange trip it was! The Patrick O'Brien Foundation's first annual Trans-Jersey Expedition for ALS awareness was a huge success. The cross state trip helped raise money for ALS and was documented all along the way for the feature film the foundation is making which will bring attention to this currently incurable illness. We would like to thank the many people who made the expedition possible and made it run so smoothly. The Caregivers, Friends, Supporters, Volunteers and Family who have worked so hard to help the Patrick O'Brien Foundation accomplish its goals today, tommorrow and in the years to come. We still have miles to go for a cure to ALS, but if we can make it across the state of New Jersey in an electric wheelchair, we can do anything. Thank you.

FOR IMMEDIATE RELEASE

Contact:
Jonathan Jaffe
Jaffe Communications, Inc.
908-276-6500

Filmmaker with ALS Undergoes Successful Trial Operation
Patrick O’Brien Becomes 11^th ALS Patient to Receive Ventilator-Free Lifestyle

SILVER SPRING, MD – August 29, 2006 – Patrick O’Brien, a 31-year-old award-winning filmmaker, New Jersey native and Maryland resident, recently became the 11^th ALS patient to undergo a surgery to improve his breathing capacity at University Hospitals of Cleveland.

O’Brien suffers from Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, but with this novel electrical stimulation system, the hope is that he can now breathe for a longer period of time without needing a ventilator.

O’Brien is only the 11^th ALS patient to receive the surgery and the hope for the freedom from a ventilator. The surgery has also proven successful on patients with spinal cord injuries with 28 patients implanted.

“The system frees spinal cord injured patients and family members from the expense, inconvenience, noise and lifestyle restrictions associated with ventilator dependence,” said Raymond P. Onders, M.D. FACS, who successfully performed the procedure on actor Christopher Reeve. “With ALS, the goal is to prevent the need for a ventilator by compensating for the death of motor neurons that deprive ALS patients of the ability to breathe.”

There is no known cure for ALS, which attacks the body’s motor neurons, or nerve cells, and proves fatal within an average of two to five years. As motor neurons are destroyed, a person with ALS loses his or her ability to walk, speak, swallow and breathe.

“The early results of patients implanted show that we can give more than 24 months additional ventilator free survival, while allowing them to breathe more easily and improving their ability to talk,” Onders added.

The system, known as laparoscopic motor point diaphragm pacing, stimulates the breathing muscles through electrodes attached to an external battery pack about the size of a television remote control. The system conditions diaphragm muscles, enhancing their effectiveness and producing negative pressure within the chest. The system also ventilates the posterior lobes of the lung that are vulnerable to pneumonia in ventilator-dependent patients.

The device costs about $12,000 and is reimbursed by Medicare. In comparison, ventilators cost approximately $120,000 a year.

Prior to his surgery, O’Brien, and his supporters, raised more than $35,000 for the Patrick O’Brien Foundation, a non-profit group, through a cross-state trek from Washington Crossing, Pa. to Asbury Park, N.J. The journey was filmed on 35mm as part of a documentary O’Brien is developing about his battle with ALS titled “October 5, 1974,” (working title). O’Brien’s 75-minute film will graphically show the operation as well as the effects of ALS on a healthy young man, leading to his eventual demise.

“I underwent the surgery and made the four-day journey to make a difference in the way our government and our world sees this ugly, soul-wrenching, insidious illness,” O’Brien said. “Unless we do something, 300,000 seemingly healthy Americans living now will die from ALS.”

If the mysteries of ALS are solved, researchers will learn what is needed to know about other devastating brain diseases including Alzheimer's, Parkinson's and Huntington's, which afflict over six million people. By bringing attention to this fatal diagnosis, victims, their families and their communities will benefit from a shift toward better resources, more accurate healthcare policies and improved treatment options.

To donate or help raise awareness for ALS, please logon to www.patrickobrienfoundation.org.