Who Is Benefiting One Year After The Ice Bucket Challenge?

We are approaching the one year anniversary of the Ice Bucket Challenge, the monster viral fundraising campaign that not only broke the Internet but, more importantly, raised a record-breaking $115 million for the ALS Association.

One year later, some of the numbers being released show that the impact of the Ice Bucket Challenge is even greater than imagined.

According to the ALS Association, the national research organization for the neurodegenerative disorder amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, 17 million ice bucket videos were made in 159 different countries leading to 70 billion views online.

Chris Kennedy, a golfer in Sarasota, FL, first posted an Ice Bucket Challenge, which was not yet related to ALS, on July 15, 2014.  At the time, participants donated money to a charity of their choice. Kennedy has a relative suffering from ALS and proceeded to challenge his friends and family to do the same.

“My cousin Chris sent me a message telling me to check my Facebook,” Jeanette Senerchia, Kennedy’s cousin, told TIME. “He nominated me as a joke because we bust each other’s chops. I was just going to donate money.”

But Senerchia accepted the challenge posed by her cousin and posted her own video on Facebook the next day. And she nominated more people. And so on.

The circle reached friends of Pete Frates, a former Boston College baseball player who was diagnosed with ALS in 2012. Frates had become very involved with the ALS Association and had a large network of supporters.  The Ice Bucket Challenge was born.

Between July 29, 2014 and September 15, 2014, the ALS Association raised $115 million from Ice Bucket Challenge related activities.  By comparison, during the same period in 2013, the ALS Association raised a total of $5 million.

The ALS Association says that $77 million of the Ice Bucket money will be directed to research; $23 million to patient and community services; $10 million to education; $3 million to increase fundraising efforts; and the remaining $2 million to pay for all of the processing fees associated with the Challenge.

In October, the ALS Association gave $10.5 million to ALS Accelerated Therapeutics (ALS ACT), a project formed to accelerate development of new treatments for the disease. Among other things, ALS ACT plans to develop neuroimaging tools as potential biomarkers for ALS progression and accelerate the development of new therapeutic approaches for ALS.

“Initial strategies will focus on decreasing the production of misfolded proteins within motor neurons and reversing neuroinflammation within the central nervous system, two major contributors to the disease process,” according to the Association.

Another beneficiary of Ice Bucket money is Cytokinetics Inc., which received a $1.5 million grant for use in a final stage drug trial. The company is starting a phase 3 trial for its compound tirasemtiv, which showed improvement in maintaining patients’ lung function.

And this month, the ALS Association announced its support of 58 new research grants ranging from $40,000 to $500,000 for a total of $11,621,638 million to find treatments and a cure for ALS.

ALS affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. There is currently no cure.

-Brad Broker

###

Photo by Anthony Quintano via Wikimedia Commons.