The timing was made for a movie. Jason Harris was in the midst of filming a documentary on how social media is empowering patients with ALS to play a larger role in disease advocacy and research, when the Ice Bucket Challenge spread like wildfire through the country’s—and then the world’s—online news feeds. The movement made its home in the ALS community early on, as patients suffering from the fatal neurodegenerative disease began participating and challenging others for their support. In mid-July, it went viral, and many ALS organizations saw a flurry of donations that dwarfed anything they’d ever received. The ALS Association, which has received the vast majority of the donations, collected $106 million between July 29 and September 2, as compared with $3.1 million during that same period last year. It was unprecedented, and it was incredible to see—and film.
I’ve never formally introduced Jason on this blog, and it’s long overdue. I met Jason while vising his brother Ben in April 2013. I had flown out to Bloomington, Indiana, to speak with Ben, who played a leading role in a patient-organized trial to test an experimental ALS treatment, for my book. Jason, who at the time worked as a videographer for a publishing company in Westchester, New York, flew out to film our interactions for his documentary. Jason and I soon realized that the story we wanted tell was largely the same, and we decided to continue working together.
In the weeks before the Ice Bucket Challenge flooded the Internet, Jason and I were making plans to visit Kelly Tison and Cassie Jerore, the wife and sister of Rob Tison, an ALS patient who had befriended Ben online and also played a notable role in the development of this patient-led trial. As the trip approached, thousands upon thousands of people started pouring buckets of ice water over their heads and pledging money and awareness to the long-overlooked disease. It brought together the patient community, including family members of those who’d already passed, and dumped more than twice the National Institutes of Health’s annual ALS investment into the lap of the disease’s national organization in less than two months time. It is not possible to overstate the superior nature of this advocacy campaign, as compared to anything that has ever before been tried to generate support for those afflicted by ALS.
If you’re wondering, I did complete the challenge myself, with the help of Jason, Kelly, and Cassie during our visit in Tennessee. It was, of course, exhilarating. Thanks to everyone who participated in this awesome movement. It will be exciting to see how the influx of funds is used, and if similar campaigns can be as successful in the future.
Correction (September 6): Jason Harris worked at a publishing company outside New York City, in the northern suburb of Westchester.