The phenomenon went viral all around social media and, now, a year later, it turns out the ALS Ice Bucket Challenge worked. Chances are someone you know has dumped a bucket of ice water on their head, a friend of a friend, a close family member or perhaps even you got soaked yourself by cold water last summer.
And, hopefully, feeling those chills down your back and freezing for those couple of moments, was also accompanied by a monetary donation. A lot of people did both the challenge to raise awareness and donated to raise funds for research toward ALS. If you ever wondered what happened to all that money, it’s reportedly going to the right place.
Amyotrophic lateral sclerosis, or ALS, or Lou Gehrig’s disease, is a neurodegenerative disorder that essentially causes death of neurons. It’s characterized by muscle stiffness, uncontrollable twitching and gradually becoming worse until difficulty breathing leads to death.
There is no cure and there is no known cause as to why it even happens in 90-95% of cases. Only 5% to 10% were found to be due to flawed genetics, but the remaining majority are still unknown, even though if affects 2 in 100,000 people per year only in the United States.
In order to raise awareness and money, the Ice Bucket Challenge was one of the trademarks of 2014 on social media accounts all around the world. The participants were challenged to dump ice cold water on themselves, donate and then nominate three others to do the same. The viral sensation has not gone without results.
Across the globe, $220 million were raised for ALS, with $115 only in the United States. Over 2.5 million people donated to the cause and the money are planned to be distributed among five areas dedicated to research, treatment and services for those affected by Lou Gehrig’s disease.
Of the generated funds, 67%, meaning $77 million will be marked for “research” in order to find better treatments, or possibly and hopefully, a cure. Existing drugs or procedures only mildly prolong life expectancy by a few months. The lifespan of a patient is of two to five years after the diagnosis.
Another $23 million are being spread between institution that handle “patient and community services” for people affected by ALS. They are being used to acquire and offer drugs, treatments and methods to better ease the patient’s life, medicine to manage symptoms or devices to aid their communication.
The third is “public and professional education”, where $10 million has gone to initiatives and education to help doctors better understand and handle patients diagnosed with ALS.
The remaining five million dollars are being split almost down the middle, with $3 million going to “fund raising” and $2 million for “external processing fee”, made necessary by simply receiving donations and bank charges.
While the sum might seem like a lot, it probably will not suffice to find a definite cure. Donations are still welcomed and ALS Association representatives encourage and hope for the Ice Bucket Challenge not to be just a one-time occurrence promoted by celebrities and politicians, but an every-summer tradition until the disease will join the list of curable disorders.
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