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posted July 10th
Go here for more details –> The 5th Annual Walk for Living
The 5th Annual Walk for Living in 2013 will benefit the ALS & MS Residences as well as Chelsea Jewish Foundation’s other entitieds and programs.
October 6, 2013
9:00 am Registration
10:00 am Walk-a-thon Begins
BBQ lunch, music, kid’s activities and more to enjoy after the WALK.
The Walk for Living will be held rain or shine so come prepared!
The first of its kind in the nation, the Leonard Florence Center for Living urban Green House® provides skilled nursing care in a home environment. The Center has ten homes, with ten residents living in each home. For more information on the Center please visit leonardflorencecenter.org.
The ALS (Lou Gehrig’s disease) and MS (multiple sclerosis) Residences at the Leonard Florence Center are also the first of their kind in the country. The ALS and MS Residences boast cutting-edge assistive technology, and patient-centered individualized care provided by skilled and compassionate staff. Residents living with ALS and MS regain their independence and dignity, and live vibrant and full lives.
posted November 4th
posted November 4th
posted April 3rd
posted March 28th
Hi guys. Just wanted to remind you, this Wed. @ 11pm on MTV will be the special about FB and hopefully some air time about ALS.
ALS can affect anyone.
"ALS is not incurable. It is underfunded." ~Dr. Stan Appel testifying before Congress.
~Visit my ALS community page and join The ALS Therapy Development Institute in finding a cure.
posted February 10th
SILVER SPRING, Md. (WUSA) - - Enjoy your worries. You may never have them again. That bit of wisdom comes from a father living with a neurodegenerative disease. Patrick O'Brien would love to do the simplest things, like hugging his son. ALS makes that impossible.
"It's a horrible debilitating disease. It's really a cruel disease," says Laura Silverthorn.
Her 34-year-old boyfriend still grabs every moment of life to make his greatest wish come true. The filmmaker uses his forehead to communicate by computer, and he works 7 hours a day on a documentary.
"It's terrifying, uplifting and full of dark humor fitting for a movie about ALS," says O'Brien.
He compares the film to a visual journey that takes the audience on a runaway train. O'Brien fights to finish the film from the bedroom he seldom leaves.
"This is the one thing he really wants. He wants something to leave for his son to see that he was proud of," says Silverthorn.
The disease stole O'Brien's mobility and most of his speech. The documentary captures compelling stages from his diagnosis through the birth of Sean last year.
"He's kind of a funny, quirky, very creative type of person. So, it's going to be a very different type of film and I really hope that it makes it to the end, so that he can really show that to the world and someday Sean can watch it," says O'Brien's girlfriend.
New Yorker Timothy Saccenti and others who love the him are working to finish the film by next summer. The freelance filmmaker had no medical insurance when he was diagnosed with what is known as Lou Gehrig's disease. O'Brien needs donations to complete the film.
"Using humor as well as classic storytelling, he finds a way to search through the darkness to find a light that will connect people," says Saccenti.
The work is already connected to Omari Matlock's heart. What was at first just an editing job has become a passion that made O'Brien like family.
"I tell him get in that wheelchair. We're going to Sundance, you know. I tell him I believe it's going to happen," says Matlock, O'Brien's editor and personal assistant.
All the filmmaker needs now is time and donations to complete the film titled, "Everything Will Be OK."
"I manage to keep it, the illness, at arm's length. But with no arms, it's getting down right impossible. With humor, with my family, with the love of total strangers, I am getting by," says O'Brien.
He does have moments a fear while living in what he describes as a leaky spacesuit. The filmmaker hopes to inspire others the way he is lifted by love.
"Omari reminded me that God has given us all these temporary space suits. Our conscious belief in God is the thing that separates us from fear," says O'Brien.
If he gets the donations to complete his film, O'Brien hopes to submit it to the Sundance Film Festival. You can find out how to help on the Patrick O'Brien Foundation website.
Written by Phyllis Armstrong
posted February 10th
filmmaker to filmmaker interview
1.you've enjoyed enormous success with your documentary, "Indestructible", culminating in a recent theatrical release in LA and Madison.
first, how does it feel finally having the film in a proper theater with Raisinettes, pop-corn and over-priced soda at the ready ? secondly, and perhaps more importantly, can you still eat popcorn given the annoying swallowing problems associated with ALS?
it feels great. a theatrical release has always been a professional goal of mine long before this film. it confirms the expectations i have for indestructible. i believe this film can play to a wide audience far beyond the als community. and it really needs to for us to make an impact. the als community already knows what this disease means to patients and their families. it also makes my ego happy knowing that i took it to the house, in football terms, while overcoming a deadly, debilitating disease. many people believed in me, but many didn't take me seriously. that made me angry. now im happy. i could eat popcorn but it would likely be the last thing i ever put in my mouth.
2. for all your female fans: boxers, briefs or neither??
in the words of the great bill Murray, chicks dig me because i rarely wear underwear and when i do it's usually something unusual.
3. talk about the day you first noticed symptoms of the disease? did you Google your symptoms? how long after were you diagnosed? your reaction? if "OH SHIT" was your reaction, please
i first noticed something was wrong when i was selling beef out of a pickup truck in yucca valley, California in the days before i knew what google was.i was opening a case of steaks for a customer and my finger didn't move right. i just chalked it up to the cold. the next four years i was in denial. when i finally was diagnosed i said oh shit, oh fuck, oh god, oh Christ, Allah, Buddha, Moses, and oh mommy. it was a nightmare that was happening in front of my eyes. but it was also strangely liberating. i knew something was wrong with me for years but never wanted to confront it. the mystery was over.
4. what was the first shot from the first shoot of the footage that ultimately became "Indestructible"?
we use a fair amount of video and photographs from my pre als life. but the first shot from the time after i decided to make this film is in the opening sequence. my friend roko belic sent me a Sony pd100, yes that camera does exist, and i set it up on a tripod around the house and started shooting myself talking to the camera, on the phone, with my son, we ended up using a fair amount of that. it isn't the most graceful shooting but it shows honestly the kind of film this began as and still is, a personal expression, warts and all.
5. i know you were an actor. could it be that this whole ALS thing is really all a prank to get on TV?
i wish it were a prank. als is horrible. but in reality, some people are going to accuse me of using my disease to get ahead in this business. there is some truth to that. as an artist one has to expose their most vulnerable side. this is one of mine. but i enjoyed a fairly decent career before this so the thought that i needed als is kind of ridiculous. it's like saying it's an advantage to be black if you're running for president. the disadvantages to having als far outweigh any perceived benefits. it's not like i grew a pair of amazing breasts.
6. what is next for the film? how can people support "Indestructible"?
theaters, festivals, dvd release, private screenings, television and internet broadcasts. we intend to create the mass exposure for als that has so sorely been missing from our national, and international, dialogue. people can visit our website, join our mailing list, see our film and become actively engaged in the als battle. becoming informed is the first step to conquering this beast. they can also support you and the important work you are doing. we need more voices that are honestly telling the als story. this significantly increases the chances of creating change so that one day als will be a thing of the past.
posted February 10th
Threadless.com has commissioned Augenblick Studios to create a t-shirt design for their Select Series with all proceeds going to the Patrick O'Brien Foundation. Patrick O'brien (AKA Transfatty) is a great friend of the studio and I encourage everyone to buy a shirt for a great cause.
THREADLESS.COM SELECT SERIES
The Select Series is proud to announce our second Curated Collection of tees. 100% of the proceeds from this Series will be donated to The Patrick O ’Brien Foundation to complete Patrick’s film documenting his battle with ALS (also known as Lou Gehrig’s Disease). The tees will be available beginning February 9th at TheSelectSeries.com.
O’Brien, an independent filmmaker and longtime friend of Threadless, created the Patrick O’Brien Foundation in 2006 to raise awareness of ALS and his documentary film about living with the disease. O’Brien has been featured on NPR, ABC, and CBS, and touts a successful commercial career on television and the internet creating unique stories for Spike TV, AOL, IBM, MTV, Microsoft, and Warp Records.
After his diagnosis with ALS in 2005 at the age of 30, O’Brien set out to do something with his illness and create his most honest project to date: to document his own life on 35mm motion picture film and spread awareness about the disease, bringing attention to those living with it in order to take a step towards improved treatment options.
“Patrick is a good friend of mine, and I’ve been a fan of his work for almost a decade,” said Dustin Hostetler, Special Projects Curator for Threadless. “When learning of his illness, and subsequent plans to make a film about it, I racked my brain for ways to help. Now through the Select Series, we can all help Patrick finish his movie.”
Through his curated line for the Select Series, O’Brien has chosen the theme of Storytellers, as well as the artists contributing to the collection of limited-edition tees. Participating artists include Aaron Augenblick , Ben Conrad , Timothy Saccenti , and Michael C. Place. 100% percent of the proceeds from the Series will go to The Patrick O’Brien Foundation.
This is the second guest-curated Threadless Select Series, aiming to pay homage to the entire spectrum of art and design - from fine art to street art, CG to sculpture, and typography to architecture. The first series was curated by RISD President John Maeda in 2008.
posted January 31st
Best Feature Profile in the Maryland/Delaware/DC Press Association
by Jason Tomassini
CONGRATS JASON! I CAN'T BELIEVE THE 'PORKCHOP SANDWICHS' TEE GOT ON THE COVER! IT WAS THE THING THAT PUSHED YOU OVER!
posted December 31st