Remember this time last year when everyone’s congresswoman, favorite singer and probably a distant cousin or 10 was dumping ice water on their heads in the name of ALS research and awareness? The global #IceBucketChallenge raised an estimated $220 million in donations and, a year after it began, we’re learning more about the effect all that money has had.
The Cambridge, Massachusetts-based ALS Therapy Development Institute, a nonprofit biotech focused entirely on ALS, is one group that received a sizable chunk of those funds. According to the institute, the $4 million it received from the campaign went directly toward research programs “with the best opportunities to make an impact to end ALS.”
A quarter of the funds received from the challenge went directly to fund the first precision medicine program for ALS, a program aimed at identifying subtypes of the disease and determining the most effective specific therapies to treat each type in order to advance them into a clinical trial, according to the institute. And the rest funded the development of two clinical trial programs.
Other groups working to address ALS, which is also referred to as Lou Gehrig’s disease, have also spoken to the impact #IceBucketChallenge funds have had on their efforts. In San Francisco, biotech company Cytokinetics received $1.5 million to fund the late-stage testing of an experimental drug, called tirasemtiv, that could improve lung function for ALS patients. This marks the first time such a drug has reached late-stage trials, according to a Bloomberg report.
As for the rest, the ALS Association has outlined how the millions of dollars in donations were doled out to other research programs, educational initiatives and patient and community services on its website. Among the other recipients of funds are the Neuro Collaborative, a partnership between three California laboratories working on developing new therapies for the disease.
"It's a bit like having an avatar of yourself in the petri dish,” Clive Svendsen of the Neuro Collaborative told CNN.
There is currently no cure or known cause for ALS and only one drug approved by the FDA that has been shown to prolong ALS patients' lives by at least a few months, according to the ALS Association.
The ALS Association plans to bring the challenge back next month -- and “every August until a cure,” Julie Frates, the wife of challenge co-founder Pete Frates, told CBS Boston affiliate WBZ last week.
According to new research released Wednesday by Treato, an Israeli startup that tracks patients’ online discussions on health issues, only 14 percent of survey participants who donated as part of the challenge last year plan to donate again this year.
Still, the challenge appears to have had a larger effect that perhaps goes beyond the fundraising.
According to the Treato data analysis, online conversations about ALS grew almost six times compared to the same time the previous year, and 29 percent of survey participants who took part in the challenge said they had little to no knowledge of ALS prior to the campaign.
CORRECTION: A previous version of this story incorrectly described Riluzole, the FDA-approved ALS treatment, as reducing symptoms of the disease. The drug, instead, has been shown to prolong the life of ALS patients by at least a few months.
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