Wednesday, September 16, 2015 // The Statement
6B
Ice Bucket Challenge, one year later
by Irene Park, Daily Staff Reporter
I
t’s been a little over a year since the Ice Bucket challenge
took the nation by storm. But, at the University and beyond,
researchers are still feeling the tingle.
Following one of the nation’s largest charitable fundraising
drives outside of a natural disaster or emergency, the ALS Asso-
ciation — the primary benefactor of the initial social-media move-
ment — is well on its way to distributing the $115 million raised
since last summer. (By comparison, the charity brought in $5 mil-
lion during the same period in 2013, the year before the Ice Bucket
Challenge went viral.)
Stephen Goutman, assistant professor of neurology and director
of the University ALS Clinic, said the Challenge not only raised
money to support ALS research, but it also raised awareness of the
disease.
“The number of people search for ALS on websites such as
Wikipedia skyrocketed,” Goutman said. “Prior to this challenge,
many individuals were not familiar with (ALS) and the devastating
symptoms associated with it.”
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s Dis-
ease, is a progressive neurodegenerative disease that kills nerve
cells in the brain and the spinal cord. When the disease kills
motor neurons, which connect the brain, spinal cord, and muscles
throughout the body, the brain can no longer control muscle move-
ments.
ALS patients in the later stages of the disease become complete-
ly paralyzed and experience severe muscle wasting. The inability
to control muscles can lead to difficulty swallowing, walking, and
breathing. Currently, there is no cure for ALS.
“It is really important to increase the recognition for this disease
not only to help strengthen advocacy efforts aimed at improving
care for patients, but also to help raise money to fund the much-
needed research efforts to find better treatments and cures for this
disease,” Goutman said.
The effects are being felt nationwide.
Researchers at Johns Hopkins University credited the Ice Buck-
et Challenge in helping to raise funds for continued studies. Last
month, Philip Wong, professor of pathology and neuroscience at
Johns Hopkins, and his colleagues published a study in Science
that demonstrated the role of clumps of proteins called TDP-43 in
the brain cells of ALS patients.
“Without (the funding), we wouldn’t have been able to come out
with the studies as quickly as we did,” Wong told The Washington
Post.
The ALS Association has said $47 million of the $115 million
raised has been spent or budgeted toward scientific purposes. The
Association revealed its full plan on how the money raised from
the Ice Bucket Challenge will eventually be spent: $77 million
on research, $23 million on patient and community services, $10
million on public and professional education, $3 million on fund-
raising, and $2 million on external processing fees. Since there is
still no cure for ALS, the majority of raised money will be spent on
research to find one.
The viral social media sensation has since credited to Pete
Frates, a former Boston College baseball player who was diagnosed
with ALS in 2012. Since his diagnosis, he was active in advocacy
and fundraising for the disease. Frates and his friend, Pat Quinn,
who was diagnosed with ALS in 2013, started the challenge — and
named the ALS Association as the benefactor — after watching a
similar ice-bucket video online.
As of September 2014, there were more than 17 million videos
related to the challenge posted on Facebook, which were viewed
over 10 billion times by more than 440 million people, according
to the Association. Numerous high-profile individuals participated
in the challenge, including President Barack Obama (who did not
actually do the challenge but made a donation instead), Bill Gates,
Mark Zuckerberg, LeBron James, Oprah Winfrey, and Taylor
Swift.
Even some University professors accepted the challenge, includ-
ing Eva Feldman, professor of neurology and director of research
at the University’s ALS Clinic, who has performed research on a
revolutionary stem cell therapy for the disease.
But, at the peak of its popularity, the movement was met with
some criticisms.
Critics voiced their concern about how it was unsatisfactory
in meeting its goal of raising awareness about the disease. Jacob
Davidson at Time magazine called the challenge “problematic in
almost every way,” mainly criticizing how the challenge did little
to explain what ALS actually is.
Davidson noted that some people like Ethel Kennedy, widow
of Senator Robert F. Kennedy, and Matthew Lauer, host of NBC’s
“The Today Show”, participated in the challenge without even
mentioning the disease. In spite of its flaws, Davidson also noted
that the challenge has done “a lot of good” but should be improved.
Paul Marantz, associate dean and professor at the Albert Ein-
stein School of Medicine, argued on his blog, “The Doctor’s Tablet,”
that it is dangerous for the public to think the Ice Bucket Challenge
was the reason for a scientific breakthrough in ALS research for
several reasons.
“Let us not mislead the public about the significance of indi-
vidual, incremental steps in the arc of science, nor promulgate the
notion that ‘crowdsourcing’ scientific discovery will get us where
we need to go,” Marantz wrote.
Regardless, the ALS Association hopes to continue the success
of last year’s Ice Bucket Challenge. The charity reintroduced the
challenge last month with a hashtag #EveryAugustUntilACure,
adopting the challenge as a yearly initiative.
Barbara Newhouse, president and CEO of The ALS Association,
said in her statement the initiative would continue every year until
there is a cure for ALS.
“Progress is being made when it comes to finding treatments and
a cure for (ALS), and we’re so grateful for the support this August
and every August until there’s a cure,” Newhouse said.