FDA approves treatment funded by popular social media challenge
Why is it important: Social media issues aren’t new, but how often do you hear about them leading to something really positive? Since 2014, the Amyotrophic Lateral Sclerosis (ALS) Challenge has prompted thousands of social media users to douse ice water and donate to the ALS Association. More than $2 million has been raised from this project, directly contributing to the newly approved drug treatment for ALS.
Earlier this week, the ALS Association announced that the FDA OK AMX0035 also known as Relivrio. Funding for the new treatment included donations to the 2014 ALS Ice Bucket Challenge, which has spread like wildfire across social media platforms around the world.
The ice bucket test gained popularity after it was popularized Patrick Quinn as well as Pete Frates. As ALS patients themselves, they are responsible for the significant increase in awareness, participation and fundraising since the issue was raised in 2014. Former professional golfer Chris Kennedy also helped. expose moving towards the mainstream. His video served as a springboard to reach a wider and more authoritative audience.
The role of social media in promoting the problem and its cause has been enormous. According to data provided by Facebook, the number of users engaging in ice bucket conversations about ALS rose from zero in early June 2014 to over 6 million by August 10, 2014. quadrupled to reach over 24 million users as of August 17, 2014.
This massive surge of activity has caught the attention of social media users from all walks of life, including Facebook’s Mark Zuckerberg himself. The revelation has led to problems for other well-known and wealthy celebrities, including Bill Gates, Facebook’s Sheryl Sandberg and Netflix CEO Reed Hastings.
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neurological disease that results in the death of motor neurons. Although this condition does not affect a person’s mental capacity, it results in a loss of strength and muscles, leading to immobility of the limbs and body, and ultimately the inability to breathe.
The donations received from the competition directly impacted the ability of the ALS Association to support the development of a new drug. In 2016, the association awarded Amylyx Pharmaceuticals a $750,000 grant to support a pilot clinical trial program for a new drug. A month later, he gave the foundation another $1.46 million in donations. ALS Northeast Consortium (NEALS) to support the phase 2 clinical trial of AMX0035.