Tech & Innovation in Healthcare

Question: I’m always curious if anything ever comes of challenges on social media where participants raise money for a cause. Does the money raised help the organization realize their goal?

Kentucky Subscriber

Answer: The money raised for different causes often does help the organizations realize their goals. For example, in September 2022, the U.S. Food and Drug Administration (FDA) approved Relyvrio as a treatment option for patients diagnosed with amyotrophic lateral sclerosis (ALS), which is more commonly known as Lou Gehrig’s disease. The drug’s development was due in part to the ALS Association’s $2.2 million investment, which consisted of money raised through the Ice Bucket Challenge in 2014.

During a 24-week, multicenter, randomized, double-blind, placebo-controlled, parallel-group study, researchers clinically assessed the participants’ daily functioning. Patients who were treated with Relyvrio (sodium phenylbutyrate/taurursodiol) experienced a slower rate of decline than patients who were given a placebo. The study also found that patients who originally received Relyvrio also observed “longer overall survival … in a post hoc, long-term analysis.”

In 2014, social media feeds were full of videos with participants dumping buckets of ice water on themselves or being doused with the frigid water by friends or family. The social media challenge was designed to raise awareness of ALS and participants and viewers donated more than $115 million for the ALS Association. Eight years later, it appears the videos and charitable donations were successful.

Since the 2014 Ice Bucket Challenge, the ALS Association has spent more than $127 million on ALS research and research project funding around the world.

According to the Centers for Disease Control and Prevention (CDC), up to 31,843 people in the U.S. are diagnosed with ALS as of 2017. ALS is a nervous system disease that affects the body’s muscles’ nerve cells. The disease causes the nerve cells to cease working and eventually die. When the nerve cells die, the patient’s physical functions are negatively impacted and leads to paralysis.

“We still have a lot of work to do to cure ALS, but this new treatment is a significant step in that fight,” said Calaneet Balas, president and CEO of the ALS Association in a Sept. 29, 2022, press release.