www.patrickobrienfoundation.org/party2

A very special night for a very special cause. Help save Patrick and cure ALS. Join us for a night of cinema, music, drinks, and food in New York's Lower East Side. Choose from one of two screenings of hilarious short films and heartwarming excerpts from the new DVD "Everything Will Be Okay". After the screening, take a leisurely stroll around the corner to the White Rabbit where you can enjoy an open bar and food and hear the greatest DJ music known to mankind, all while helping to raise awareness for this incurable illness.

Buy Tickets Now

An excerpt from an interview between NPR’s Aaron Henkin & Patrick O’Brien. [POBF.org]

The full interview appears on Aaron’s program: “The Signal”. [WYPR, Baltimore]

Air date: Soon.

NPR:
On your website, you posit the question: “If you were given 2-5 years to live, what would you do?” Ever since I was a kid, I’ve heard people ask each other variations on this question, but it’s always been in the abstract, just as way to make conversation… but for you, there came a time when you had to ask yourself that same question, and there was nothing abstract about it… what’s it been like to try to figure out the answer?

POB:
Well, my Laura has me on a ten-year plan. So I can’t die before then. I think that focuses your mind, the window of two to five years. And everything changes overnight. You stop shooting video and you start shooting film. You stop getting into small arguments. You are able to navigate the world almost as if you have a GPS system that says ‘five years of battery left.’ And that informs all your decisions. It’s a good question for everyone to ask themselves. If you put yourself in that mind-space for a minute, that window of two to five years, what would anyone do. Most people will tell you the exact same answer: Eat all the chocolate you can. Run up the credit cards. Go to Las Vegas. Go for broke on all levels. And that’s what I’m doing. I’m going for it. I expect to live a long time. And there may be a cure, but if there’s none, the main thing is to live for the moment, for today. If you live in the now, you have access to the infinite. I always remember that. Eckhardt Tolle said that. If you live in the now, you have access to the infinite. And I can only do that 5 percent of the time, but that’s all you can do.

- Patrick's November Surprise
- POB's Nude White House Protest
- Show your support
- New files: "Believe" and "Intermission"

GREETINGS, EVERYONE!
It’s been two years since I was handed the death sentence known as ALS, and it’s been one year this June since I began my fight against ALS and launched the Patrick O’Brien Foundation. I’m proud to say we’ve exceeded all expectations beyond what any of us could have imagined a year ago at the first POBF benefit.

We’ve crossed the state of New Jersey together in electric wheelchairs. We’ve
captured the often funny, sometimes sad and always heartwarming effects of ALS
on me and my family. We’ve shown the experimental medical procedure known as
diaphragm pacing, and most recently I’ve protested
naked in front of the White House (WARNING: nudity) against Bush’s veto
on stem cell research! Wow, what an inspiring year it’s been!

I am pleased to announce, save for two more film shoots which I will review later, the magnificent completion of two years of filming and the end of this phase of the project! Thank you to everyone who made this past year one of the happiest, exciting and most fulfilling years of my life.

Thirty hours of incredible film and video footage later, I enthusiastically begin the process of editing the film down to 2 hours. This creative process involves not only editing, but also musical scoring, special effects and other essential aspects toward the completion of this feature length film.

Now, more than ever, I need all of your help and support. One year ago when I edited the first promotional film for the website, I was still able to use the mouse and keyboard. Now, I am typing using a switch under my thumb. It’s funny, the more physically disabled I’ve become, the more diligent I am about accomplishing the goals before me.

Lastly, this movie needs a hope-filled ending. I am happy to announce I have one. In November, Laura and I will be the proud parents of a child. This is one of the final film shoots of the movie I’d like to do. Being a father is something I had always hoped for, but when I was diagnosed I crossed it off my list of expectations. I hope you will join us in celebrating this new little life.
www.patrickobrienfoundation.org/wp-content/uploads/2006/06/videos/believe.html

We will be having a party in New York later in the summer to celebrate the accomplishments made over the past year. We hope you’ll join us. Invites will be emailed and posted on the Foundation website in the coming weeks. I’m looking forward to seeing all of you again.

Wishing you and yours a peaceful and prolific summer,
Patrick Sean O’Brien

Show your support
You can support “October 5, 1974” in a number of ways.

* Forward this email
* Host a screening of the DVD: “Everything Will Be Okay”
* Include our website as a link to yours
* Tell as many people as possible about this film
* Pray for me and/or send me positive energy
* Donate money to help complete the movie

To make your tax-deductible donation, click here:
www.patrickobrienfoundation.org/donate-to-pob

To mail your donation, send a check or money order to:
Patrick O’Brien Foundation
P O Box 436
Reisterstown MD 21136

To see an ultrasound of Patrick and Laura’s baby, click here:
www.flickr.com/photos/patrickseanobrien/542680175/

To see Patrick’s White House Protest, click here:
(WARNING: nudity)
www.rebelwithoutastemcell.com

"Patrick Surrounded by Family at the ALS Candlelight Vigil held at the WWII Memorial during ALS Advocacy Week, May 14, 2007. Photo by: Mark Coughlin

HAPPY SPRING ! We here at the Foundation hope all of you are enjoying Spring and all its mysterious beauty. We are very enthusiastically working every day on several inspiring projects. Almost one year ago I received a visit at my home in Silver Spring from Michael Cina, who along with Jason Kristofer, suggested making a promotional DVD to gain more exposure for ALS, the Foundation and the Feature Film. Although the feature film has no title yet, I am overjoyed to announce the completion of the promotional DVD, which is titled: “Everything Will Be Okay or How I Learned to Transcend Form, Live in the Now and Make Love in my Electric Wheelchair”.

We will be meeting with Senators, policy makers, people with ALS and their families, activists and others from around the world at ALS Advocacy Day. (May 14^th, 15^th, 16^th in Washington, DC) We’ve made 1,000 DVD’s and will be disseminating a portion of these powerful awareness-raising tools over the course of these three days.

Additionally, to celebrate the one year anniversary of The Patrick O’Brien Foundation, a DVD release party is to be held in New York City during the month of June. The details of the event will be announced soon. Stay tuned !

Happy Winter!

It's been a while since we posted any "news and events", so here goes:  Just before the first of the year the Patrick O'Brien Foundation received a very special envelope in the mail.  Inside was a 25,000 dollar contribution.  This enabled us to film the winter/Valentine's Day segment of the film, and produce the DVD:  "Everything Will Be Okay".  Both of these projects will be made public soon.  In other fundraising news, long-time friend, supporter and collaborator, Tara McNulty, has been organizing an awesome online art auction.  The auction has raised well over 1,000 dollars and most importantly brought the art and design community into the POBF family. Thanks Tara! Do you have something you can put on ebay that would help raise ALS awareness?  Visit www.therapywithneedles.com for info.  In other news, our cinematographer Ian Dudley and our producer Marcia Mohiuddin were married Feb. 25th.  Congratulations Marcia and Ian!  We expect you to be producing lots of little cinematographers someday soon!   Finally, in between film shoots we have been steadily documenting life in the 'burbs, and posting the results on Flickr and in "Messages from Patrick".  Take a look and leave a message for us while you're there.  That's news for now, and since we never know how to end these updates, we're taking the suggestion from a young friend:
"TTFN! (ta ta for now!)"

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