“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Margaret Mead
Most of last night was spent learning about Tim LaFollette, a young, talented, witty musician who was diagnosed with ALS (Lou Gehrig’s Disease) in ’09 at 29. And his friends who decided that they were going to do something about it.
As I blogged in an earlier post, there is no cure for ALS. Tim was all too familiar with this–both his mother and grandmother died from ALS when he was a child. I don’t know that any of us really know how we would respond if we were told we have 12 months to live, the average mortality rate of his particular type of ALS. Tim chose, according to his site, to refuse a silent death.
SO WHAT DO HIS FRIENDS DO? They create Often Awesome, an organization that helps Tim and his wife Kaylan through their journey with ALS. They broadcast bi-weekly documentary segments about Tim online to raise awareness of ALS and to put a face on this disease. They found the Often Awesome Army, a growing number of 1400 individuals committed to helping Tim by fundraising, donating, volunteering between nurse shifts, and spreading the word about ALS. They take his message viral on facebook and youtube. Some have even gotten Tim’s signature swallow tattoo in honor of and in support of his cause. What a message that sends to us all.
Scott Avett of the Avett Brothers was approached by the Often Awesome Army about helping raise money for Tim; he subsequently raised $3400 by auctioning off his original artwork online. Scott said that using his artwork to help another has been “an awakening for me” that something as natural for him to do, like art, could serve someone in need.
“Tim’s condition is so terrifying, and it conjures up a fear within me of dark days, of when we’re put to the test to truly be hopeful and truly keep our head up. And that makes him a hero to me… (He) has a relationship with that impending end. To conquer that fear or live with that fear or react to that fear in a positive way is how I want to be. It’s how people should want to be.“
And the effort is worth it. “I have never seen an amount of miles put down, cash involved, people to a show, compliments in a bag ever that give you the fulfillment or reward that the quiet piece of service will do… It’s endless, and any of us can do it” Scott explains during an Often Awesome interview. The Avett Brothers’ stage manager, Pete, was responsible for connecting the two together. He says, “a lot of people have things, not necessarily money, but we all have a way to make a difference. You just harness that and pull it together, and the things that can come out of that are incredible.”
It’s that commitment to making something better, to improving someone’s life through acts great and small that have really inspired me with Often Awesome. Whether it’s recruiting the help of famous musicians, hosting community fundraising events, or raising enough money to purchase a wheelchair accessible van, this is truly an army who have channeled all of their love for Tim into something that actually makes a difference. Their passion, energy, grit, and determination is an inspiration to all of us who are fighting for our loved ones to have a higher quality of life and have the support needed as they live with their illness or disability.
So go, and be not simply good–be good for something.