A guest blog post from our friends at the Often Awesome Army:
Our friend, Timothy LaFollette, is incredible. He is 30 years old and newly married. He is a phenomenal songwriter, a charismatic musician, a talented video editor, a fantastic cook and most of all, a really good person. He is also sick: stupid, unfair, scary and painful sick, which can't be fixed. In April 2009, at age 29, Tim was diagnosed with Amyotrophic Lateral Sclerosis - ALS (Lou Gehrig's Disease). 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.
Tim has a rare genetic strain, SOD1, which is a particularly ruthless subtype with a median survival rate of 12 months. Thankfully, Tim has survived his first diagnosis "birthday", and is approaching his second, but there have been no advances in treatment in the 28 years since his mother fell to the same illness. Tim is practically house-bound and has lost his ability to care for his basic needs.
There is a silver lining to this seemingly sad story. Because our Tim is one of the most open-hearted, pure and hilarious people we know, he's able to talk about his decline with phenomenal humor and truthfulness. Also, because our Timmy is also one of the kindest, most generous and charismatic people we know, he has an enormous community of friends fighting to make the rest of his life as wonderful as we possibly can.
We felt inexpressibly powerless and lost as we watched our amazing friend experience muscle spasms and then become increasingly clumsy. We witnessed him slowly lose his ability to move his limbs and then his respiratory function began to decline significantly, as he took shallower breaths and his voice became hoarse.
Born from an interest in caring for our friend, and supporting his wife, Kaylan, our group, the Often Awesome Army was created. Our "Army" started off as a small, close-knit group of friends. We made t-shirts, stickers and patches, and found ways to laugh through the sadness. We produced benefit rock shows and art auctions and raised money to help Kaylan buy a wheelchair accessible van, affectionately referred to as the ALSUV. We created a community of caretakers who stopped by Tim's house throughout the day, bringing him food, helping him bathe and toilet, and sometimes just to watch horror movies with him. As Tim’s illness progressed we formed the Core Care Team, of friends who volunteer their caregiving time and are trained on Tim’s equipment, to supplement the home nurse care that became constantly necessary.
Our Often Awesome Army has grown into a community of over 1,600 members. Scores of us have tattoos which signify solidarity with Tim. While each design is unique, all are based on a tattoo that Tim has on his arm: a flock of swallows that he got 10 years ago, to commemorate his mother’s passing from ALS. Like the formation of the army itself, the tattoos started off confined to a small tight-knit group of friends and eventually, people around the world have gotten tattoos in support of Tim. Many people with these tattoos had never had a tattoo before, like Tim’s ALS doctor from Duke, who proudly announced he was joining the army and going under the needle.
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. Though this disease affects a relatively small percentage of the population, and there is very little awareness, Tim refuses to die a silent death. ALS is not just a disease that attacked a baseball player 70 years ago; it is an ongoing struggle faced by thousands daily. Every 90 minutes, someone is diagnosed with ALS, and every 90 minutes, someone dies of ALS.
Tim's quest for spreading ALS awareness has resulted in Often Awesome: The Series, an award-winning web series about his journey with ALS. It features incredibly forthcoming interviews with Tim, his wife Kaylan, and members of the Often Awesome Army.
We invite you to watch the series, learn more about the Often Awesome Army, and support our efforts at www.oftenawesome.org.