The web series
Often Awesome documents the life of Tim LaFollette, who was living with amyotrophic lateral sclerosis or Lou Gherig's disease. On August 23,
Tim died at the age of 31.In 2009, when he was 29, Tim LaFollette was diagnosed with a rare hereditary form of
ALS, the disease that killed his mother and grandmother. ALS is a fatal degenerative disease that causes people to lose control of their muscles. People who have ALS lose the ability to move, swallow or breathe, while their mental faculties remain intact. Familial ALS, which accounts for only 5-10% of all cases, strikes younger and progresses more quickly than the more-common "sporadic" form of the disease.
After his diagnosis, Tim's friends and supporters in the Greensboro, NC art and music community rallied around him and his wife Kaylan, creating the
Often Awesome Army to help with Tim's care, raise money to buy equipment that would improve Tim's quality of life, and raise awareness about the disease. The army raised funds and awareness through benefit concerts, art auctions, roller derby bouts, and sales of merchandise, such as
this t-shirt based on the
swallow motif tattoo that Tim got in memory of his mother and many of his supporters got in honor of him.
The web series makes clear what a cruel disease ALS is and how inadequate current treatments are. There is some cause for hope, though. On the same day that Tim died, researchers at Northwestern University announced a
breakthrough in understanding the causes of the disease, which they hope will pave the way for research into effective treatments.
posted by Renoroc at 12:24 PM on August 28, 2011