Our inspiration
Our friend, Timothy LaFollette, was incredible. He was a phenomenal songwriter, a charismatic musician, an excellent video editor, a ridiculously good cook and most of all, a really damn good person. He was also sick. Not the "take two tylenol and call me in the morning" kind of sick. Stupid and unfair and scary and painful sick. The kind of sick that can't be fixed. In April 2009, at age 29, Tim was diagnosed with Amyotrophic Lateral Sclerosis - ALS (Lou Gehrig's Disease). ALS runs in his family. At least five generations of Tim's family have died from ALS, including his mother and grandmother, who both died within a year of their diagnosis.

The type of ALS he has is a particularly ruthless subtype with a median survival rate of 12 months. After less than a year from diagnosis, Tim was practically house-bound and lost his ability to care for his basic needs. There is a silver lining to this seemingly sad story. Because our Tim was one of the most open-hearted, pure and hilarious people we know, he's was able to talk about his decline with phenomenal humor and truthfulness. And because our Timmy was also one of the kindest, most generous and charismatic people we know, he has an enormous community of friends who successfully fought to make the rest of his life as wonderful as we coupld.

We felt so helpless, our little group of friends. We watched our amazing friend, the guy who was known for walking around our college campus barefoot in a cow suit, experience muscle spasms and then become increasingly clumsy. We witnessed him slowly lose his ability to move his limbs. We watched him lose his respiratory function, taking shallower breaths as his voice became more and more hoarse. We watched as he decided to receive a voluntary tracheostomy and used a ventilator to breathe. And then we were there when he lost the function of all of his limbs, his ability to talk and eat and his reliance on a computer to communicate. We watched these things and words cannot express how lost and powerless we felt. We wanted to care for our friend, and support his wife, Kaylan. And so the Often Awesome Army was born.

Our "Army" started off as a small, close-knit group of friends. We made t-shirts and stickers with a silhouette of Tim standing like his idol, Charlie Chaplain. We found ways to laugh through the sadness and the back of the t-shirts said, "Putting the Team in Terminal!" We put on benefit rock shows and art auctions. We raised money to help Kaylan buy a wheelchair accessible van. We created a community of caretakers who stop by Tim's house throughout the day, bringing him food, helping him bathe and toilet, and sometimes just to watch horror movies with him. Our Often Awesome Army has grown into a community of over 1300 members. Over a dozen of us have gotten tattoos of swallows. We chose the swallow as a symbol for Often Awesome because Tim chose to have swallows tattooed on his arm in honor of his mother. Some of us who have these tattoos have never even met Tim; we were just so inspired by his story and his fight.

Tim realized early on that he had a responsibility to spread ALS awareness. This responsibility is to his family, the community of patients with ALS, their loved ones and to the larger population of people who don't even know about ALS. Tim refused to die a silent death. This disease affects a relatively small percentage of the population, and there is very little awareness. ALS is not just a disease that affected a baseball player 70 years ago - it is an ongoing struggle faced by thousands daily.

Tim's quest for spreading ALS awareness has resulted in Often Awesome: The Series(with the help of All Aces Media Company) about his journey with ALS. It features incredibly forthcoming interviews with he, Kaylan, and members of the Often Awesome Army. The series received an Outsanding Achievement Award in the Documentary/New Series category in the LA Webfest in March of 2010 and Outstanding Reality Series LA Web Festival in 2011 (http://www.lawebfest.com)

Tim was also featured in "Young Faces of ALS", a awareness campaign from The ALS Therapy Development Institute. He was chosen, along with a group of seven other young adults, to show the world that there is no such thing as a typical patient with ALS- it can strike anyone. http://www.als.net/News/Article.aspx?id=5369

Surrounded by family, friends and caregivers, Tim lost his individual battle on August 23rd, 2011 but the fight is far from over and the Often Awesome Army is committed to continuing to provide support to the ALS community.

Our Future
While we are all continuing to work through our loss of Tim, keeping his vision alive and continuing to raise awareness of ALS is something that is important to all of us. The first part of 2012, we have been dedicated to successfully turning Often Awesome non-profit organization that will help to continue to raise awareness of ALS. If you are interested in being an active part of the new OA moving forward, please email us with your name, contact information and any specific areas where you could assist at info@oftenawesome.org

For more information on ALS please visit www.als.net