Remember the craze involving selfies, videos, a bucket of ice cold water, donations and nominations which plastered Facebook pages, Twitter feeds and news headlines last summer? Well here’s a recap of the 2014 ALS Ice Bucket Challenge, what has transpired since, and how that mountain of donated money is being allocated.
FACTS & FIGURES
Amyotrophic Lateral Sclerosis (ALS), commonly referenced as Lou Gehrig’s Disease, is a neuro-degenerative disorder which damages nerve cells in the brain and spinal cord. Symptoms typically start out with muscle fatigue, stiffness and twitching as the disorder begins to “waste” the muscles, leading to atrophy and paralysis. The disease steadily progresses into difficulty with speaking and swallowing, breathing complications, and eventual death via respiratory failure. According to the ALS Association (ALSA), an average life expectancy upon diagnosis is two to five years. The ALSA also reports that in the U.S. alone, approximately 5,600 people are diagnosed with the disease each year, and 20,000-30,000 (about 2 in every 100,000) Americans are afflicted with ALS in any given year. That may sound like a “drop in the bucket” to some folks, but I’ve watched two dear family friends slowly and painfully succumb to this hellishly wretched disease. Because it is not a predominant illness the likes of cancer or heart disease, ALS is considered an “orphan disease”, and therefore the National Institutes of Health (NIH) delegates just $40 million of its annual $30 billion medical research budget for ALS causes. That equates to just over 1%. (Thanks to the Congressional Budget Sequester debacle of 2013, the NIH’s current $40 million ALS research budget was slashed from $59 million in 2012.)
BRING ON THE CHALLENGE!
On July 15, 2014, television host Matt Lauer accepted a nomination from pro golfer Greg Norman, and did the Ice Bucket Challenge live on NBC’s The Today Show. That same day, Florida golfer Chris Kennedy accepted an Ice Bucket Challenge from a friend who was raising money for a cancer patient. Kennedy apparently chose to earmark his donation in honor of a family friend who was suffering from ALS. And so it went … and went … and went … viral! A Google search I recently conducted on the 2014 phenomenon yielded these results: In August alone, 90 million internet searches were made on the Ice Bucket Challenge. During that same month, over $100 million dollars were raised for ALS research via the Ice Bucket Challenge, which brought Challenge proceeds to $115 million. Impressive, to say at the least. Martin Luther King, Jr. once said, “There is power in unity and there is power in numbers.” Amen!
SPENDING THE MONEY
ALSA recently announced they will be tripling the money spent on research, and have allocated an initial commitment of $21.7 million from Ice Bucket Challenge donations to improved and expedited treatment and expansive research. An additional $12.5 million in matching donations has brought the total commitment to $34.2 million. ALSA has partnered for the next one to three years with four members of a Global Research Cooperative Alliance to collaborate on research that has been identified as crucial in finding new treatments for the deadly disease. The partners – ALS Accelerated Therapeutics, New York Genome Center, Neuro Collaborative and Project MinE, by all accounts seem to be a diverse group of leaders in ALS research. Efforts will initially focus on gene and pharmaceutical therapies, collaboration with world-renowned labs dedicated to research on ALS therapies (Cedars Sinai-Los Angeles, University of CA-San Diego and the Gladstone Institutes, and University of CA-San Francisco), and the participation of some 15,000 people currently living with ALS to identify genes which may increase risk of ALS and/or protect against it. Considering that until very recently there has only been one drug, Riluzole, approved for treatment of ALS symptoms, (it merely slows the need for ventilator-dependence or tracheostomy by a few months), this ALSA announcement no doubt comes as encouraging news to ALS patients and their loved ones.
We play the waiting game. There are plenty of skeptics out there who suggest that anyone thinking Ice Bucket Challenge proceeds will cure ALS is simply dreaming. Perhaps so – a cure for ALS is clearly a lofty goal at this point. But in just one summer (more specifically one month in 2014), millions of people raised $115 million for ALS research. It would take 3-1/2 years of reliance on NIH payouts to match the donations from last summer. Yes, the 2014 Ice Bucket Challenge was in some ways a measure of narcissism, but that “egomania” spawned a grass roots movement which led to an explosive awareness of this debilitating and deadly disease. Flash-in-the pan or not, $115 million in funds will assuredly aid in desperately needed research, therapies, pharmaceutical trials, and genetic studies which could eventually lead to therapies and treatments to slow or prevent onset of this deadly disease. According to a Time Magazine article published on 11/4/2014, ALSA President and CEO Barbara Newhouse believes this funding could lead to significant progress in the fight against ALS, but cautioned that it is just a start by saying, ” … we would be kidding ourselves if anybody believed that $100 million is going to be all that’s needed to find an effective treatment.” At the very least, August 2014 got the ball rolling …
(Feature Image photo courtesy: sammy-riggs.com via Google Images)
Dedicated in loving memory to: