It’s officially been 10 years since the ALS Ice Bucket Challenge! Back in 2014, Anthony Senerchia, Pete Frates, and Pat Quinn, who were living with amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease, at the time, created the challenge to help spread awareness for ALS. The challenge consists of pouring a bucket of ice water over someone’s head. ALS is a disease that degenerates the nerves which weaken muscles and leads to progressive muscle weakness. ALS was discovered in 1869 by French neurologist Jean-Martin Charcot, but it wasn’t widely known until 1941. On June 2, 1941, Lou Gehrig, a well-known baseball player who played for the New York Yankees, passed away due to this destructive disease – he was only 37 years-old. Gerhig had retired only two years before the fatal result of the disease. Eighty years later, Major League Baseball (MLB) named June 2 “Lou Gehrig Day” across the network to honor Gerhig, raise awareness, and educate more people about the fatal disease.
Every 90 minutes someone is diagnosed with ALS and someone passes away from it. ALS affects about 16,000 people in the U.S. and Europe. An estimated 5,000 people are diagnosed with ALS every year. No one knows what causes the disease. It has no cure…yet.
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In 1985, The ALS Association was founded. It’s a non-profit organization that funds global research for the cure to ALS; it’s the world’s largest private founder of ALS research. Their mission statement is “to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” With the creation of the Ice Bucket Challenge, The ALS Association received over $115 million throughout the summer months for cures and tests. Over 17 million people uploaded videos online of them participating in the challenge. Many celebrities participated in the challenge such as Taylor Swift, Martha Stewart, Jimmy Fallon, and even former Presidents Barack Obama and Donald Trump. The Ice Bucket Challenge raised both awareness and funds for the journey to find the cure to ALS.
The CEO Soak is an event inspired by the Challenge. The event is where members from local communities to CEOs of companies get soaked by a bucket of ice water being poured on them, standing in a fountain, or even sitting in a dunk tank. Every CEO Soak is different to each community because they’re the ones who create the event. According to the ALS webpage on distinguished events, “the CEO Soak engages business & community leaders to get soaked once again for ALS while raising critical funds and awareness for the ALS Association’s mission.”
According to the April 2019 ALS Association Executive Summary Report, the Ice Bucket Challenge helped fund 29 new ALS Certified Treatment Centers of Excellence, 20 new Recognized Treatment Centers, and seven new affiliated clinics that increase the availability of ALS care. Within the domain of clinical improvements, home visits, caregiver support, nutrition services, social services, and health navigation were also increased. Four million dollars went to the ALS Therapy Development Institute (ALS TDI) and every August they encourage people to participate in the challenge; over $135 million has been raised since the challenge started in 2014. Half of the funds raised were invested in ALS Research Collaborative (ARC); the funds expanded the program and helped further improve the search for ALS drug discovery efforts. ARC is an ALS research study where people living with ALS are asked about how the disease is progressing and ALS TDI gathers their data to find treatments against ALS and a cure for it. Not only does the ALS Association make an impact on the fight against ALS, but it has also made an impact on those living with ALS.
ALS is a fatal disease with no cure, as of now, but with fundraisers and events to fight against it, a cure may be well on its way. Currently, developments in genetic research have proven whether individuals have the genes linked to ALS. Through ALS Identified, a no-charge genetic testing program, the look for changes/mutations for the 40 specific genes in an individual has begun. If mutations are present in specific genes, they could be the cause of ALS or increase the chances of the individual developing the disease. About two-thirds of ALS patients have familial ALS (FALS), the hereditary type of ALS, and 10 percent of individuals with sporadic ALS, the most common type of ALS where the individual has no family history or associated risk factors to the disease, have one or more of the genes that are linked to ALS. About 90 percent of cases of ALS are categorized as sporadic.
There are many chapters of The ALS Association across the country. For example, the Western Pennsylvania Chapter collaborated with Team Challenge ALS holds an annual run for those living with ALS and for the fight against it. Team Challenge ALS is a program run by the ALS Association created to raise funds for the treatments and a cure for ALS. Those who participate compete in athletic events or any other endurance activity to help fundraise. For the individuals who can’t find events near them, they can create their own fundraiser through Defeat ALS Your Way. Defeat ALS Your Way allows anyone to start a fundraiser to help create a world where ALS doesn’t exist.
Over the past decade, the Ice Bucket Challenge has assisted in the journey to discovery of a cure and treatments for ALS; it expanded ALS research funding worldwide by 187 percent and $137 million have gone into ALS research. In a press release from the ALS Association, Calaneet Balas, the president and CEO of The ALS Association stated, “five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease.”
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To learn more about ALS and The ALS Association, go to their website: https://www.als.org/understanding-als and follow them on Instagram at @als