To be truly inspired, please check out Carla’s blog here.

The ALS Therapy Development Institute (ALS TDI) announced today that it is supporting a new awareness campaign driven by several ALS patients diagnosed with the progressive neurodegenerative disease commonly known as Lou Gehrig’s disease before the age of 30. This campaign, called ‘Young Faces of ALS’, is designed and led by a group of seven young men and women and will consist of a group effort to visit each of the 30 Major League Baseball (MLB) parks during the 2010 baseball season. The Young Faces of ALS Campaign will leverage this national platform to educate people about how ALS can strike anyone and that there are no typical ALS patients. They hope to encourage greater action toward supporting on-going research at ALS TDI to slow and stop the disease. ALS TDI was co-founded by Stephen Heywood, who was diagnosed with ALS at age 29. Stephen lost his battle with ALS during the fall of 2008.

A grassroots movement, this Young Faces of ALS group is using Facebook and other online social media to share information about the campaign, including pictures from the games each of them attend. The group regularly meets via conference call or video call and works together to choose who will go to each game. The group also invites other ALS patients diagnosed at a young age to contact them and get involved with the campaign. An anonymous donor provided funding to execute their project and the group relies on their friends and other ALS patients in the cities they visit to help provide other forms of support.

Wherever the group goes they will be answering questions and fundraising via text message set up by the Institute. People can donate $5.00 to ALS research and in support of the Young Faces Campaign by sending ‘EndALS’ to 20222. A website is planned that will contain full bios, pictures and a blog regarding the group’s efforts and travels during the 2010 baseball season. This public awareness campaign is an independent effort and is not affiliated with MLB or any specific baseball organization. For more information, please email us at info@als.net.

See the full article here.

Almost a year ago we met here. It was the first often awesome benefit show in the first time I really felt the full effect of the warmth of the community. I still can’t quite describe the feeling, but I remember feeling wholly undeserved of such goodwill. I had a hard time imagining what I had done in my life that merited the positive energy surrounding me. For someone who had just been diagnosed with a terminal disease, I was one happy motherfucker.

And oh what a night it was. There was great music, great friends, and the easiest opportunity to have my new band play in front of hundreds of people. I still feel my spirits buoyed by that night and the high that I felt which had nothing to do with the weed I smoked or the beer I drank I still feel today.

But here’s the harsh reality. Last year I walked up on the stage and I played my heart out. In a years time much has been taken from me. I can no longer walk. I can no longer play music of any kind. If I try to sing I don’t have the breath to support it. In fact there’s almost nothing I can do without having other people do it for me. I can’t bathe myself. I spend my entire life either in a wheelchair or hospital bed but have no ability to transfer from one to the other without what is essentially a human crane. I piss in the plastic urinal bottles or use a catheter and I shit into a bedside commode. I can’t even wipe my own ass. I can still eat and speak but there are signs that that soon will be a thing of the past. And sadly, because extreme fatigue is simply run-of-the-mill for this disease, I will have to leave this show long before it’s over because I simply don’t have the energy to stay.

I say none of this because I seek pity or because I go around feeling sorry for myself. The truth is that the often awesome army has made the most difficult time in my life into something special. Because of the Army, I know I always will have people help me with the things I can’t do myself. I may have lost four limbs but I’ve gained hundreds.

But I want to make one thing clear. The often awesome movement is not about me. For one it’s about community. But more importantly it’s turned into a true ALS awareness campaign. Which is what it needs to be. We are America’s best kept secret disease. Most people simply don’t know what it is or how it affects people. The pharmaceutical companies will never care about us because there’s not enough of us to be profitable. It’s been 28 years since both my mother and grandmother died of the same disease and we still have no way of treating it. And now too I am dying from it.

The only way to fight this disease is to wage a full on awareness campaign. Because until the public is made aware of how devastating this disease is to those affected by it and their friends family and community, no movement forward can be made.

Kaylan and I sincerely thank each and every one of you for the kindness, love and care you’ve shown us over this very difficult year. I can’t begin to express my gratitude. As I said before there has been far more positive that’s happened since my diagnosis than negative. I couldn’t ask for any more.

But I’m going to. Please educate yourself about what this disease does. And talk about it. Remind people that this is not simply a disease that took a baseball player in 1939. But a disease that still remains untreated and can affect people as young as 16. Invite them to be a part of the often awesome army. Spread the word about the web series. Please help me raise awareness of this disease.

Thanks to all who made this night possible. Those who put it together, and the musicians who are lending their talent.

– Timothy LaFollette

The study, published in the American Journal of Epidemiology, involved 184 U.S. male veterans with ALS and 194 vets without the disease. All of the men were white and the average age in each group was 63 and 64, respectively.

Analyzing blood samples from the men, the researchers found that a doubling in the blood lead level was associated with a doubling in the risk of ALS. That was true even when the investigators accounted for markers of bone breakdown — suggesting that it was not the ALS causing the higher lead levels.

Full article can be found here.

It’s true that Tim LaFollette is one tough son of a bitch. I have never seen a better man go through a worse ordeal in my entire life, and I have seen much. And though the disease is creeping through his system, gathering strength even as he loses his, he’s determined to face things on his own terms for as long as he can.

Like this afternoon, his final gig. “I wanted to make the decision myself,” he says. “I didn’t want to be up there onstage, not be able to play and bust out crying.”

And so it goes, the final drumbeat, and though the occasional grimace of fear washes across his face, Tim’s remarkable stoicism and candor against these indignities is nothing short of humbling.

You can read the full Yes! Weekly article here.

For every view of this video, the Extreme Makeover sponsors will donate a penny to The ALS Association, an organization that encourages scientific research to find a cure for ALS, heightens awareness of the nature of the disease, stimulates volunteerism and activism, and increases awareness of government leaders to encourage support of research and patient care. You can HELP STOP ALS!

Just wanted to let everyone know that we’ll be putting on another benefit show for our friends Tim and Kalyan who are battling ALS (Lou Gehrig’s Disease). All proceeds will go to help with Tim’s quality of life care. This event is planned for Tuesday, May 18, 2010 starting at 8:00pm. Performers that night include The Numbers (Snuzz and Sam Frazier), Jews and Catholics, Come Hell or High Water, Treason and DJ Royale, Mutant League, Collector and Social Life. Along with the great music performances, there will also be a raffle. If you have any items, gift certificates or services that you would like to donate for the raffle then you can do so by contacting Anne Meade Paden here. We’ll also be filming this event for a future episode of the series so please come and put all your pretty faces in front of our cameras. All this for just a $5.00 minimum donation. You can’t beat that. Come join us for an amazing night of music and friends! For directions and more info you can check the Greene Street Official Site and the Facebook event page.

Here’s the episodes which feature the previous two benefit shows:

Gareth Gordon recently completed the Belfast Marathon. He ran 26.2 miles to create awareness for Timothy LaFollette, The Often Awesome Army and for ALS. His training included running 620 miles over the course of 4 months. Truly amazing what friends can do for one another especially in a time of need. Hats off to you Gareth.

I learned a lot from my experiences with ALS, as well as my experiences writing this blog. Almost everyone has a story of loss or longing and almost everyone desires a way to find meaning in our lives that whirl past us so quickly. Almost all of us count our loved ones as our most cherished commodity and yet, so many of us don’t have or make time to spend with them. We want to stop and smell the roses, we want to fully embody gratitude in our hearts and minds, we want to be the best ‘us’ we can be, and yet the road is beset with detours and roadblocks.

Truly inspiring blog by Carla Zilbersmith. Everyone should take the opportunity to read her blog here. You owe it to yourself.

Check the band out here.