Ice Bucket Challenge a boon for ALS research
Thursday, January 15, 2015
It was like nothing medical-research fundraising had ever seen.
It was a movement, really.
Three men with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, decided to videotape themselves dumping buckets of ice water on their own heads, the way coaches get buckets of ice and Gatorade dumped on their heads after a victory. And while standing there wringing wet, these three men—all very young, all of whom had been heavily involved in sports before their diagnoses—challenged three other friends and family members to do the same, saying if they didn’t take the challenge, they’d have to send a check to an organization benefitting ALS—a progressive neurodegenerative disease that has no cure, has no effective treatments and leads to paralysis and death two to five years after diagnosis.
The three men posted their video on social media and, within days, their Ice Bucket Challenge had spread like crazy, and millions of people around the world soon were dumping ice on themselves or writing checks to ALS organizations—or both.
Celebrities galore posted videos of themselves doused and shivering, pleading with the public to do the same, and as the weeks went by, people got more creative with the challenge. They dumped buckets of ice on their heads while paddle boarding; they stood on mountain tops and had ice dumped on their heads from a helicopter while wearing only underwear; one man used a backhoe instead of a bucket; one entire wedding party did it while dressed in their finery; and some people even used dry ice for an eerie effect.
A true sensation, it was all over the internet, TV and radio.
Within a month, an estimated $220 million had flowed into various ALS advocacy groups around the world. The ALS Association—the largest and most public ALS patient advocacy organization in the U.S. and the one that took in the most money from the challenge—saw an unprecedented $115 million drop into its coffers.
“A few days after the Ice Bucket Challenge started, everything went crazy, and money was coming in from everywhere,” Barbara Newhouse, president and CEO of the ALS Association, said of the summer months. “We didn’t sleep.”
The organization then had to act fast to figure out how best to use the influx of cash, she said. Prior to the Ice Bucket Challenge, the ALS Association had identified four genomics-centric projects it wanted to fund and had non-ice bucket donors waiting to match its contributions to these projects once the association had funds to donate. Those projects, said Newhouse, look for better treatments as well as a cure. So as soon as ice bucket money began streaming in, the ALS Association sent $21.7 million to fund those four promising projects, immediately tripling the amount it spends annually on research.
The association then decided to wait and be far more measured in its decisions about what to do with the rest of the money. Newhouse said it pulled together a group of stakeholders—members of the research community, the care services community, chief scientists and ALS patients—to help it decide what areas were most in need of funding.
The group decided to spend most of the remaining funds on traditional bench research and clinical management projects, as well as “other potential research projects that will help us fast track some of the drug therapies coming along,” said Newhouse.
But decisions are still being made.
“We don’t have all the answers right now about where every dollar is going,” she said. “We’re still looking at being very strategic about that, with a sense of urgency.”
Key to it all will be investing in a way that allows the organization to continue funding promising projects for years, not just today, Newhouse said.
One thing is certain though: All of the research funded will be “open source”—accessible to all others working to find better treatments and a cure for ALS.
“That’s important, because what we know is that no one person right now has an answer, so by doing open source, we’re hoping to have many lines of research cross paths and, hopefully, being open about what we’re working on will help find the answers,” Newhouse said.
Another U.S.-based ALS organization, ALS Therapy Development Institute (ALSTDI), garnered $3.5 million in donations as a result of the Ice Bucket Challenge. An independent organization led by patients and families, ALSTDI is totally research-focused.
Rob Goldstein, spokesperson for ALSTDI, said the funds allowed the organization to greatly increase enrollment in a trial it already had launched in its two-year-old Precision Medicine Program, which focuses on looking at ALS as an individualized disease in each person it affects, since each patient progresses differently and, researchers believe, may have a different molecular cause.
ALSTDI had funding to enroll 20 people in the program, but since the Ice Bucket Challenge can fund 300, Goldstein said. The program now will drill down on genetic sequencing in people with ALS.
In addition, ALSTDI will use $1.5 million of its new funds to further replicate preclinical findings on a protein that appears linked to ALS, a program in which ALSTDI already had become involved but now can dig deeper into, more quickly.
“We think this protein probably plays a role in all or most ALS, and this may be a very exciting approach,” said Goldstein. “These funds couldn’t have come at a better time.”
He said the extra funds ALSTDI can commit to the project, plus matching funds from Swiss biotech Neurimmune Therapeutics, likely will speed research on the protein by two years.
Prior to the Ice Bucket Challenge, said Goldstein, donations tended to come only from individuals who had a friend or family member with ALS. But the Challenge changed all that, at least for one moment in time, he said, and a lot was learned.
“It told us that there are liquid funds out there that can be accessed, and people are willing to donate them, but you have to make it easy for them, and fun,” he said.
But can the success of the Ice Bucket Challenge be replicated? Already, others have tried.
There’s been a Lather Against Ebola campaign, in which people were encouraged to dump soapy water on themselves and then give out three bottles of hand sanitizer to help stop the spread of the virus. There was the Rice Bucket Challenge, in which rice is not dumped on anybody but simply is held in a container while the person challenges others to give to a food bank to feed people in India. In the Rubble Bucket Challenge, people dumped rubble on their heads to show support for Gaza and Palestinians. And the Bullet Bucket Challenge saw actor Orlando Jones dump shell casings over his head in an effort to “reverse the hate” following the police shooting of an unarmed black teen in Ferguson, Mo.
But, not surprisingly, most people have never heard of those efforts. That’s because you can’t really duplicate a spontaneous, organic, virally spreading phenomenon like the Ice Bucket Challenge, said Claire Sears, director of investigator engagement for DrugDev, an interactive network and data-sharing platform for clinical investigators which itself took the Ice Bucket Challenge—encouraging its investigators to participate and then matching the funds donated.
“It’s a self-limiting model,” said Sears, who last month led a webinar about the impact of the Ice Bucket Challenge for clinical investigators. “The pubic’s enthusiasm for this kind of thing wanes as soon as it becomes too familiar. This tells us there will always be a place for traditional fundraising.”
But there also may be a place for other creative, organic, fun, spontaneous efforts that hit the public in just the right way, as the Ice Bucket Challenge did, and are led by individuals, said Meryl Weinberg, CEO of the National Health Council, a nonprofit association of patient advocacy groups including the ALS Association.
“It would be very hard for an organization to ever create the kind of personal connection and spontaneity that an individual is able to do, and that individuals did when they started the Ice Bucket Challenge,” Weinberg said. “I can’t imagine anything coming from an organization that had that level of personal impact and emotion. Organizations just don’t have those emotions.”
ALSTDI’s Goldstein agreed.
“If an individual tells you to move, you might; if an organization tells you to move, you’re less likely to react,” he said. “From a marketing and nonprofit perspective, because of social media and the internet we’ve removed the power that organizations have to tell you how to think. As patient advocates, we will learn from that.”
Thankfully, said Weinberg, her member organizations understand this acutely and are not feeling the pressure to create the next Ice Bucket Challenge. One thing they have realized, though, is that social media is a huge and potentially helpful force not to be ignored.
“The Ice Bucket Challenge has helped our organizations understand even more deeply that social media is critically important to how they engage with people in new and different ways,” she said.
The hope also is that the challenge opened the eyes of those who hold the purse strings in the biopharmaceutical industry.
“I hope they see that even with an orphan disease, you can reach millions of people, getting some of the top decision makers in the world to care about it and to act,” said Goldstein. “And I hope it helps them to not be afraid to use social media, to create patient advocates, to teach them to use the tools to connect them, to empower them and then to get out of their way.”
Weinberg said the effect, the hows and the whys of the Ice Bucket Challenge will be studied for years to come. In the meantime, she said, she just has to smile.
“I grin every time I think about it,” said Weinberg. “It was so effective, such fun, and had people from every walk of life participating and passionate about helping people with one of the most horrific conditions a person can have. How cool is that?”
Suz Redfearn is an award-winning journalist and former senior staff writer for ClinPage.com. Her articles have appeared in numerous publications, including the Atlantic.com, the Washington Post, Slate, Salon, Politico, Men’s Health, MedPage Today and Physicians Practice. Suz holds a degree in print journalism from Loyola University in New Orleans and has been a medical writer since 1990, focusing on clinical research since 2007. Email email@example.com.
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