New York Magazine article on political writer, Tony Judt, who is 2 years into his battle with ALS.

(Photo: Marco Grob)

“The meaning of our life,” Judt continues, “is only incorporated in the way other people feel about us. Once I die, my life will acquire meaning in the way they see whatever it is I did, for them, for the world, the people I’ve known. I have no control of that. All I can do is do the best, now.”

The article can be found here.

“Art is a tool of empowerment and social change, and I consider myself blessed to be able to create and use my work to promote health reform, bring awareness about ALS and help others.”
– Tony Quan, aka Tempt One

The EyeWriter project is an ongoing collaborative research effort to empower people who are suffering from ALS with creative technologies. More information on this project can be found here.

Through the years, Tim has been a member of several different bands, Decoration Ghost is his current and probably final band that he’ll be performing on stage with. Andy and I originally started filming a couple of Decoration Ghost practices because we figured we would work it into one of Tim’s episodes as part of something that he did. As we were around the band more, we were impressed with how good they are. We ended up filming several live performances of the band and were first hand witnesses at the challenges they faced having someone perform live that is battling ALS. Their story is really a feature length documentary unto itself. We decided that we would make the band’s story a two-parter because it was too big to fit within the 10 minute time restriction of Youtube. The first part discusses the origin of the band and the challenges they face having a member who is battling ALS. The second part will discuss the recording of their album and the urgency of doing so since Tim was losing the ability to play bass. Because we want the series to be in somewhat chronological order, we’ll be posting the second half of this story after a few more episodes.

“It’s fucking earnest and soulful. It’s too important to ignore.” – 10Listens

Photo courtesy of Katie Southard

Decoration Ghost is an incredible band. All friendship’s aside, I think they are one of the best bands I’ve heard in quite some time and their CD is great. North Carolina has a very rich and diverse musical history and Decoration Ghost will no doubt add something very special to that history. You can download a free song here (where the album is available for purchase, hint, hint). The album can also be downloaded at Digstation. Find them on Myspace and Facebook, you will be glad you did.

Diagnosed with ALS, a fatal neurodegenerative disease, filmmaker Ben Byer starts documenting his life on camera. What begins as a series of video diaries grows into an epic journey spanning three years and six countries as he scours the globe looking for answers – and a cure.

A cinematic adventure filled with extraordinary characters, breathtaking landscapes and abundant humor, Indestructible is beautifully shot by Academy Award™ nominee Roko Belic (Genghis Blues). In his first feature film, Byer takes us on a visually stunning global quest to survive as he begins to understand the power of the human condition.

For more info on the film, including theatrical screenings and how to buy the dvd, go here.

Boston Globe story on the book about Jim Cotter, BC High’s legendary football coach.

But the one thing that’s in every page is honesty. From talking about his parents, life in Savin Hill (where “I got a PhD in human nature’’), or the death of his first wife from alcohol and depression, Cotter’s honesty is everywhere. Right down to the first line of the book: “I’m Jim Cotter, and I’m dying of ALS.’’

You won’t feel sorry for Cotter when you put the book down.

“I never felt sorry for myself,’’ he writes. “What am I going to do, sit around and brood about my problem?’’

The Boston Globe story can be found here. More on Jim Cotter’s story can be found at the official site.

“Keep The Light Alive: Celebrating The Music Of Lowen & Navarro,” is a new tribute album to longtime songwriters Eric Lowen and Dan Navarro with heartfelt covers from the duo’s extensive catalog, recorded by such famous friends as Jackson Browne, Keb’ Mo’, The Bangles, The Refugees, Stonehoney, and Five For Fighting’s John Ondrasik, among others.

Article can be read here.

You can find out more info and purchase the CD here.

Students at Northpoint High School in NY have raised 1.5 million for ALS research in honor of a couple of teachers in their school district who had been diagnosed with the disease. They have supported 9 different ALS organizations over the past six years. Much like our friend Tim, they believe that collaboration is key to finding a cure.

A Midwinter Night’s Dream is an annual charity fundraiser held by The Northport High School chapter of the National Honor Society that supports Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease) research. You can find out more about it here. This year’s event, held January 7th, 2010 raised $412,000. Guest speakers and honorees included Comedian Richard Kind, Yankees’ Nick Swisher and Comedian Caroline Rhea as well as many others.

There are many ways that you can help. Donate money, create awareness and be creative like the kids at Northpoint High. Tim’s Often Awesome Army has held benefit music performances, art auctions and other fundraising events with more to come in the future. Don’t think that your idea is silly or can’t make a difference because it can. Think outside the box. I think the most frustrating thing about this disease is the lack of public awareness. I think if more people were aware of how terrible this disease is then there would be more of an urgency to get researchers the funding they need to find a cure. Much respect for the students at Northpoint for a job well done.

For those of you interested in donating money for research, you can do so here.

ABC affiliate, KGO-TV article on a group that’s creating awareness and raising money for ALS research with a unique calender.

With the help of friends, she’s produced a calendar, titled “ALS — Always Looking Sexy.” The photos are take-offs on Hollywood movies, with Carla starring as the “Little Mermaid.”

You can find the ALS – Always Looking Sexy Calender here.

I don’t get a chance to sit down and watch TV much (at least as it airs) but some friends recently made me aware of CBS’ show, Live For The Moment that featured someone who was battling ALS. LFTM is an inspirational reality show that gives someone living with a terminal illness the chance to do the things in life that they dreamed of doing. Roger Childs is a man living with ALS and this show revolved around him and his family. It can be viewed here. Please take the time to check the episode out online. Like Tim’s story, it will make you appreciate the important things in life.