The Fight Against ALS

Photo Credit to iStock

I am an enormous fan of those who use their celebrity or semi-celebrity status to give back to their community, state, nation, or the world.  I read a story on ESPN a couple of days ago, and I instantly knew I had to blog about it.

Even those who follow professional baseball somewhat closely have probably never heard of Stephen Piscotty.  He is not famous for crushing home runs, stealing bases, or striking out opposing batters.  Piscotty plays right-field for the Oakland A’s, but that’s not why I had to write this article.

Even if you have absolutely no interest in sports, I think it will be hard for you not to shed a tear after reading about Piscotty.  In 2017, Piscotty was playing for the St. Louis Cardinals when he learned that his mother, living in California, was diagnosed with ALS. 

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.  It weakens muscles as nerve cells break down.  Early symptoms of the disease include muscle cramps, muscles twitches, muscle weakness, slurred speech, and difficulty chewing or swallowing.  It eventually leads to death.  As of now, there is no known cure.  The average survival time for people with ALS is 3-5 years, but others have lived ten or more years with this condition.

Piscotty wanted to be closer to his mother to offer whatever support he could while still playing baseball.  Sports is big business, and it was noteworthy when the St. Louis Cardinals traded Piscotty to the Oakland A’s to allow this to happen.  As a result, Piscotty could spend time with and support his mom, Gretchen, who later passed in 2018.  What Piscotty has done since is substantial, but first, I need to go back in time.

The real story of the fight against ALS happened back in 2014 when Pete Frates and Pat Quinn started the Ice Bucket Challenge. Pete Frates, a former Boston College baseball star, was diagnosed with ALS in 2012 at 27.  I came across this video about Pete Frates’s story.  Please don’t be put off by its length.  It’s over 13 minutes but well worth it.  I would suggest having some tissue nearby.

Pat Quinn was diagnosed with ALS in March of 2013, a month after his 30^th birthday. He also was an athlete, playing rugby in college, but became more famous for his activism with ALS. After seeing the ice bucket challenge on social media, Pat knew it was an avenue to raise ALS awareness.  Together Pete and Pat helped raise millions of dollars for research, and equally important, awareness of this debilitating disease.  As a result, both Frates and Quinn were nominated for Time Magazine’s Man of the Year.   

For those unfamiliar with the Ice Bucket Challenge, it was a relatively simple concept.  The idea was that participants were to get filmed dumping a bucket of ice water onto their heads and then nominate others to do the same.  One of the accepted protocols was that each nominee had 24 hours to meet the challenge or forfeit by way of a charitable financial donation for ALS research.  As part of the process, the participant nominated three other people to meet the challenge.  It went viral in the summer of 2014, and when famous sports figures and other celebrities got involved, the movement grew exponentially.

I first became aware of the Ice Bucket Challenge when our son took part in college back in 2014.  He went on to nominate three others, including his high school football coach. 

Our son taking part in the Ice Bucket Challenge in 2014.

Were there plenty of skeptics?  Absolutely.  “Dump a bunch of ice water on your head?  How is that supposed to help?”  But it did help.  More than 17 million people posted videos online, including Bill Gates, former President George W. Bush, Justin Bieber, LeBron James, Lady Gaga, Oprah Winfrey, and numerous other well-known personalities.  As a result, the Ice Bucket Challenge raised $115 million for the ALS Association and over $220 million worldwide for ALS research.  The video below shows the impact that these dollars are having.

Sadly, Pete Frates died at the age of 34 in December of 2019, while Pat Quinn passed in November of 2020 at the age of 37.  However, their efforts have made a tremendous difference.  Progress in the fight against ALS is happening, and these courageous men helped raise awareness of this deadly disease.

After Stephen Piscotty’s mom passed, he continued to use his status as a professional athlete to help raise money and bring joy to others.  When baseball resumed last year during Covid, many teams responded by putting cardboard cutouts of fans in the seats. Unfortunately, no spectators could attend the games.  I admit that I thought it was rather corny at the time to see these cutouts, and I wondered why they were there. However, Piscotty and the A’s found a way to use these cardboard creations in creative ways.  Baseball fans quickly snatched up all of the seats in sections 106-108 (an area close to Piscotty in right-field).  By purchasing these seats, they could have a cardboard replica of themselves at the game. Most of the money from the purchase of the seats went to the ALS foundation.  When a baseball struck a cutout, Piscotty signed the baseball and made sure the ball ended up in the fan’s possession.  Here is the story ESPN did on Piscotty and Brian Mulhern, a former usher with the A’s who has ALS:

https://www.espn.com/mlb/story/_/id/31739206/the-inspiring-story-oakland-outfielder-stephen-piscotty-cardboard-cutout-fan-living-als

Even though I’m a huge sports fan, I don’t watch much baseball, but I know that I will root for Stephen Piscotty and the A’s after seeing the video and reading the story about him.  Celebrities and athletes need to understand how much impact they can make when they use their voices. People will not remember others because they own mansions and a host of fancy automobiles, but they will remember your character.  That’s the way I’m going to remember Pete Frates, Pat Quinn, and Steven Piscotty—men of character.