24 November 2020 00:31
Pat Quinn, who helped make the Ice Bucket Challenge go viral, died Sunday after a seven-year battle with amyotrophic lateral sclerosis (ALS). The ALS Association announced the death of the "ALS hero and co-founder of the ice bucket challenge," calling him "an inspiration to millions of people around the world." The Yonkers, N.Y., native was diagnosed with the nervous system disease — which affects nerve cells in the brain and spinal cord, making it hard to walk, speak, eat, swallow and breathe — just after his 30th birthday. As a result, his friends and family rallied around him — a support group called "Team Quinn for the Win — in an effort to raise awareness and funds toward ALS research. In 2014, Quinn saw the cool challenge on the social media feed of the late Anthony Senerchia, who lived near him in Westchester County, N.Y., and was also battling ALS (also known as Lou Gehrig's Disease). So Quinn's and the late Pete Frates's supporters (Team Frate Train) ran with the concept, turning "the challenge into the biggest social media phenomenon in history," according to the ALS Association.
The challenge raised $115 million for the non-profit and over $220 million around the world for ALS research, leading to important advancements in the study of it. Practically every celebrity got in the action, which saw them having a bucket of ice-cold water dumped on them. Participants were also supposed to donate to the ALS Association — and nominate other people to do the same and get soaked. Quinn was honored with Senerchia and Frates by the ALS Association as "ALS Heroes" in 2015. Quinn continued to raise money toward ALS research in his final years, giving talks and holding an Ice Bucket Challenge in his hometown every year ("Every August Until a Cure").
There remains no cure and no effective treatment to halt or reverse, the progression of ALS, per the National Institute of Neurological Disorders and Stroke. Unless you spent the entire summer of 2014 offline, you'll remember the viral Ice Bucket Challenge. Everybody from Oprah Winfrey to Miley Cyrus took the challenge, which involved taking videos of themselves dumping buckets of ice water on their heads, sharing the footage online, and nominating others to do the same. But the most important step was donating to ALS (amyotrophic lateral sclerosis) research. Now, the Ice Bucket Challenge is back in the news. Patrick Quinn, the co-founder of the challenge, has died at the age of 37 after his own seven-year battle with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. "Those of us who knew him are devastated but grateful for all he did to advance the fight against ALS." The organization revealed that the Ice Bucket Challenge, arguably the biggest social media phenomenon to date, raised $115 million for the ALS Association and more than $220 million around the world for ALS research. After seeing the challenge on the social media feed of the friends and family of the late Anthony Senerchia, who had ALS, Quinn teamed up with Pete Frates, another ALS sufferer, to promote it to raise awareness of the disease. In 2015, the ALS Association honored Quinn, Frates, and Senerchia as "ALS Heroes" at their annual leadership conference. ALS is a complex disease that's not yet fully understood by researchers and doctors. ALS is a group of rare neurological diseases that affect the nerve cells (aka, neurons) in your body that control voluntary muscle movements, like chewing, walking, and talking, according to the National Institute of Neurological Disorders and Stroke (NINDS). It's a progressive disease, meaning it gets worse over time, due to the gradual deterioration and death of the motor neurons, or nerve cells that extend from the brain and spinal cord to muscles throughout the body. Men are slightly more likely than women to develop the disease, as are Caucasian and non-Hispanic people, and symptoms tend to show up most often between the ages of 55 and 75. The disease is often missed in the early stages, because the symptoms are subtle, per the NINDS. Over time, these symptoms develop, leading to more noticeable weakness or atrophy (degeneration or shrinkage of muscle or nerve tissue). The ALS Association notes that the initial symptoms can vary quite significantly between people. On the other hand, "bulbar onset" is when people first notice difficulties with speech or swallowing. No matter where symptoms first appear, muscle weakness and atrophy spread to other areas as the disease progresses. In 1993, ALS research made a breakthrough when scientists found that mutations in the SOD1 gene were associated with some cases of familial ALS. According to the National Institute of Neurological Disorders and Stroke, most people with ALS die from respiratory failure, usually within 3 to 5 years from the first onset of symptoms. While there's still no cure for ALS, various treatments can help to manage symptoms and make it a little easier to live with the disease. Doctors might prescribe medication, such as riluzole (Rilutek) and edaravone (Radicava), which are both approved by the US Food and Drug Administration (FDA) to treat ALS patients. According to the Muscular Dystrophy Association (MDA), riluzole is the only known drug to have any impact on survival, and edaravone has been found to slow functional deterioration in some patients. Other medications can be prescribed to manage different symptoms, such as muscle cramps, stiffness, pain, drooling, and what's known as the pseudobulbar effect (involuntary or uncontrollable episodes of crying and/or laughing, or other emotional displays).