Shannon Byron steadies her voice, looks into the camera and explains why she’s about to endure one of the longest ALS ice bucket challenges posted online since the viral campaign took off three weeks ago.
She’s not afraid of the frigid shower she’s about to take, she’s taking the chance to stand up to the disease that “robbed” her father, George Byron of his life at 61, and stole him from her family nine years ago.
Byron, a communications officer at the City of London, moved home after finishing at York University in 1996 like any other young adult. Everything was hunky-dory until her mom died suddenly in October 1997.
Strangely, her dad never seemed to get all the way through the grieving process and was starting to act strangely and becoming forgetful. In January 1998 a neurologist ran a battery of tests and decided it was most likely Frontotemporal dementia (FTD) with motor neuron disease (an exact diagnosis can't happen until the brain is autopsied).
In the early stages George could still take care of himself but changed about a year later when she came home from school one day near the end of her communications program at Fanshawe College to find the stove on fire, so she became his primary caregiver. By 2001 she noticed his gait was changing: he was leaning too far forward when walking, and he was starting to shuffle more than step. She said it presented like Parkinson’s.
He moved into a nursing home in fall 2003. Within months, he was bound full-time to a wheelchair as the ALS took away his ability to walk. Byron said when he passed in 2005, unable to eat solid food, he was a shadow of his former self.
ALS is a progressive neurodegenerative disease that impacts nerve cells in both the brain and spinal cord. With this disease, an individual progressively loses voluntary muscle action and may eventually become completely paralyzed. Frontotemporal dementia (FTD) is similar, in that it is also a neurodegenerative disease through which neurons in the frontal lobes of the brain are destroyed.
“It’s horrible,” Byron said. “It progressed so rapidly I couldn’t manage his care alone.”
Thanks to the viral popularity of the Ice Bucket Challenge, which sees participants accept a challenge from someone else, ask for donations and nominate two or three others to join the movement before pouring ice water over their heads, fewer people may have to go through the same thing.
So why did it take off? Andrew Schiestel, managing partner of London’s tbk Creative, said the ice bucket challenge has a few things going for it.
“It’s very hard to predict if something will go viral, or we’d all produce campaigns like that,” he explained. “What the challenge did a good job of is encouraging a lot of people to be producers of content who would never normally do that.”
He said the time is right too. The campaign would have gone nowhere in North America or around the world even five years ago because smart phones weren’t as prolific, and they didn’t feature powerful video technology.
YouTube wasn’t as popular and other video hosting websites/services like Vine and Vimeo didn’t even exist yet.
“The technology caught up with the concept,” he said. “It’s also wrapped around a good cause, which makes it more acceptable and less narcissistic. And the content itself is exciting to people because it’s alarming. You don’t wake up in the morning and put pouring a bucket of ice water on your to-do list.”
If the goal was awareness, he said the ALS associations “knocked it out of the park.”
“It reminds me of the movie Pay It Forward,” he said. “They drew on that logarithmic aspect.”
Local ALS Canada spokesperson Rebecca Grima said the idea didn’t start with the organization but it sure addressed their biggest challenge, awareness.
“This has opened up the channels of communication so the conversation around how we can make a difference has started,” she said. “Also, families are thanking us for transforming the perception of ALS. They don’t feel so alone in the struggle.”
As of Friday afternoon (Aug. 22) the ice bucket challenge had raised $2.4 million in 16 days. To put that in context, Grima said the organization’s biggest fundraiser, the Walk for ALS (which takes place in London on Sept. 27), has a national goal of $4 million from April to September.
“This is unprecedented in the last 16 years in terms of ALS,” she said. “Everything is due to the ice bucket challenge.”
The society’s audited financial statements are available online. Grima said they haven’t decided exactly how to divvy up the ice bucket windfall but based on past practices, funding is usually split between five buckets: research, client support (equipment rentals, support and bereavement groups for clients and their families, home visits), public awareness (which the ice bucket challenge will save the Society on) advocacy (lobbying government) and the volunteer program.
It’s an expensive disease that costs an average of $150,000 per year, as family members tend to leave their jobs to become a primary caregiver.
Byron said her main motivation for taking the challenge was to get in the conversation and remind people to donate and ask for pledges when they take the plunge. With equipment and supervision costs and loss of income, she knows first hand what the disease takes away from the patient and their family.
She’s very interested in research too, not least because FTD has a genetic component that puts her at greater risk.
Just last week scientists announced they had created the first strategy to target a specific genetic mutation linked to both ALS and the type of dementia George Byron had, opening the door to a possible treatment for many patients.
Byron recalled a phone call from a neurologist at London Health Sciences Centre in 2012 telling her some of George’s brain, which he donated to science, had been used in a breakthrough FTD-MND study at the world famous Mayo Clinic.
“They’re still able to look at his cells years later and he is contributing to science,” she said. “It was so powerful to me to know he’s already been a part of science and is helping researchers better understand the disease.”