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Time to check some things off your Bucket List. Come join us for one or all three of our Challenge Events in support of ALS.
We are a registered 501c3 Non-Profit, Tax ID 27-1823372, with a Mission to put on physcially challenging events that include StairClimbs, Cycling and Skydiving, where the participant, steps outside their comfort zone to understand the extreme challenges that ALS patients face everyday.
ALS, Amyotrophic Lateral Sclerosis, aka Lou Gehrig Disease, named after the famous New York Yankee baseball player who developed ALS in 1939 was forced to retire after 17 seasons (which was the longest streak of any American playing in MLB, all with the Yankees). Gehrig was renowned for his prowess as a hitter and for his durability, which earned him his nickname, The Iron Horse.
Lou Gehrig died from ALS on June 2, 1941, just 17 days before his 38th birthday. ALS is a progressive neurological disease that was discovered in 1869 by a French doctor named Jean-martin Charcot. As a progressive disease, it means it gets worse over time destroying nerve cells in the brain and spinal cord which control the muscles throughout the body. Those nerve cells lose their ability to initiate and control muscle movement, which leads to paralysis and death. People with the condition lose control of muscle movement, eventually losing their ability to eat, speak, walk and, ultimately, breathe.
The life expectancy varies for each individual after diagnosis is 8 to 10 years. With some people it can be as short as 3 years or as long as 20 years, or even 55 years as it was for the famous, renowned scientist, Stephen Hawking. He was diagnosed in 1963 at the age of 21 and died March 14, 2018, a remarkable and unheard of 55 years later. ALS can also go undiagnosed for several years, too. So here we are 80 years after Lou Gehrig’s passing and ALS is still incurable and as devastating to individuals and families as ever.
Over 30,000 Americans suffer from ALS at any given time, with a new case diagnosed every 90 minutes.
So, what has been happening?
Even though many famous people have died of ALS, the awareness factor is still pretty low. You say ALS to people, and some may know what it is. You say Lou Gehrig Disease and more know, but you say Ice Bucket Challenge and it’s, oh yeah, I did that!
Until the Ice Bucket Challenge went viral in the summer of 2014, a lot of people had no idea that such a disease even existed. Once people started getting involved, the campaign brought in over $220,000,000 worldwide to support ALS. A total incredible accomplishment. The origin of the campaign has been attributed to Pete Frates, a Boston College alumnus who was diagnosed with ALS in March 2012 and Pat Quinn, who was diagnosed just a year later in March 2013.
The Ice Bucket Challenge was an activity involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of ALS. The challenge encourages nominated participants to be filmed having a bucket of ice water poured on their heads and then nominating others to do the same. A common stipulation is that nominated participants have 24 hours to comply or forfeit by way of a charitable financial donation. Quickly the challenge went viral through Social Media with celebrities posting videos. They included Formal President George W Bush, Bill Gates, Oprah, Patrick Stewart, Taylor Swift, Chris Pratt, Jeff Bezos and many others. In the end over 20 million videos were posted blowing up social media and creating the most successful fundraising campaign in history.
Unfortunately, like with all people with ALS who eventually pass away, so did Pete and Pat. Pete died December 9, 2019 at age 34 and Pat died just recently on November 23, 2020, at the age of 37. Way too young for both of them. The legacy of these two ALS Warriors, along with many other you will find out about, will live on forever because of what they did to bring greater awareness to this horrible, “BEAST” of a disease. August is Ice Bucket Challenge Month so “Every August … Every Year … Until There Is A Cure” do an IBC and honor Pete & Pat.
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