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It’s a phenomenon that began in the summer of 2014 and became known as one of the most successful fundraising campaigns in social media history. Former Boston College baseball player Pete Frates, who had been living with amyotrophic lateral sclerosis (ALS) since 2012, is credited with launching the phenomenon where supporters pour buckets of ice and water onto themselves in order to raise awareness and cash for the disease. It could not have been predicted how many people would ultimately feel the thrill of the chill in the splash-for-cash craze known as the ALS Ice Bucket Challenge, nor the financial windfall the Challenge would generate for the ALS Foundation. To date, more than $220 million dollars has been raised by the challenge since its debut.
The Ice Bucket Challenge was the perfect blend of motivations as a project that appealed to the masses: a worthwhile cause; compassionate enlightenment of the disease by those close to those suffering the most and, as exhibited by the challenge itself, even total strangers; an opportunity to produce unique selfies; and a theatrical curtain call for adding value to social media posts.
As many as 30,000 Americans are living with Lou Gehrig’s Disease at any given time. Beloved professional baseball player Lou Gehrig brought ALS to the national and international forefront when it ended his career. The disease is so often associated with Gehrig that it bears his name. It most commonly strikes worldwide between the ages of 40 and 70. Life expectancy for those with ALS is between two and five years. It is not contagious and is responsible for nearly two deaths per hundred thousand. It is a progressive, neurodegenerative disease, affecting nerve cells in the brain and spinal cord. As motor neurons from the brain to the spinal cord to muscles die, patients in later stages of ALS become totally paralyzed. “It’s such a terrible disease and as you can imagine, for the folks who have it or the family members, it’s just desperation that something’s going to work,” said Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke.
Researchers reported this month in the New England Journal of Medicine that they have discovered a new experimental medication that is effectively slowing the progression of ALS in clinical trials. The research, largely funded by proceeds from the Ice Bucket Challenge, is promising new hope for ALS sufferers and families. It is not a cure for the disease, but it may help slow the extensive disability caused by ALS, which destroys the nerve cells that control the muscles that allow movement, speech, and the ability to eat and breathe. Two advocacy groups are calling for swift action to make the drug available to patients.
The new two-drug combination was able to slow the progression of ALS paralysis by about six weeks over six months, approximately 25 percent more than a placebo. On average, patients on a placebo declined in 18 weeks to a level that patients receiving the treatment didn’t reach until 24 weeks, according to the report. “Finding new promising treatments for ALS will require new approaches. Our discovery of the potential involvement of Type I PRMTs in C9orf72-mediated ALS opens up entirely new and unexplored avenues for neurological drug discovery. I’m excited to advance this program and see what impact this could have on ALS,” said ALS TDI’s Chief Scientific Officer and study contributor, Fernando Vieira M.D.
The new treatment came too late to help Pete Frates, the driving force behind the historic challenge. Pete lost his battle with ALS in December 2019 at the age of 34. “A natural-born leader and the ultimate teammate, Pete was a role model for all, especially young athletes, who looked up to him for his bravery and unwavering positive spirit in the face of adversity. He was a noble fighter who inspired us all to use our talents and strengths in the service of others.”
Every week volunteers gather across the globe to participate in fundraising events targeted to finding important discoveries for debilitating diseases affecting millions of victims. Few of those committed to raising money ever learn of the impact the efforts are having on finding treatments or cures. The process of finding new medications and treatment usually takes decades of persistent effort on behalf of researchers. This week, the millions of participants in The Ice Bucket Challenge are seeing promising results of the years of dedication and commitment.