In August of 2017, I heard the words that I had been trying to avoid throughout the previous 3+ years of tests and doctor visits: “you have ALS.” I participated in the Ice Bucket Challenge a few years prior, but I really didn’t understand the disease. Like most people, I Googled ALS when those three letters first came up in my diagnosis. What I read was disheartening: 1) there is no cure, 2) ALS is always fatal, and 3) people typically have 2-5 years to live from the time of diagnosis. ALS stands for amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Almost immediately, I knew that I needed to do something to support the efforts to find a cure and fight back against this disease.
This summer, my family and I are traveling the country in an RV and visiting all 30 Major League Baseball stadiums. It’s a trip that is a bucket list item for many people. For me and my family, it’s also a campaign to raise awareness and raise money to find a cure for ALS. Visiting ballparks is the vehicle for my mission to meet other people affected by ALS and tell their stories. Throughout my journey with ALS, I have met extraordinary people, who despite a devastating diagnosis, live their lives with gratitude, courage and hope, and are making the most of the time they have. Their positive attitudes have been an encouragement to me, and my hope is that others get inspiration from their stories as well.
Fortunately, my ALS progression has been slow; however, my muscles continue to fade. I’m getting weaker and there is not a proven way to stop the disease. At the beginning of this year, I asked myself the question: When I look back on 2019, how do I want to see that I spent my time? The idea of traveling the country with my family, meeting others who had been affected by ALS and telling their stories quickly took shape. I approached a Salesforce.org customer, the ALS Association, as well as Salesforce.org leadership, and received very encouraging feedback about the idea.
So how did this turn into a tour of all 30 ballparks?
This summer, we are celebrating two very important anniversaries in the world of ALS. July 4th marked the 80th anniversary of Lou Gehrig’s “Luckiest Man” speech. Lou Gehrig has been called one of the greatest first basemen to ever play the game. His prowess as a hitter and his streak of playing 2,130 consecutive games (a record that stood for almost 60 years before it was broken by Cal Ripkin) earned Gehrig the nickname “The Iron Horse.” It was ALS that finally took him from the field. His legacy inspired me to call my campaign the “Iron Horse Tour.”
Gehrig called his diagnosis “a bad break,” but the theme of his speech was gratitude for the people in his life and for the opportunities he had been given. Lou Gehrig’s diagnosis, and “Luckiest Man” speech pushed ALS into the spotlight 80 years ago. Yet here we are today with no cure and very limited options to even slow down the disease.
However, the other anniversary we are celebrating this summer did a lot to try and change that. The “Ice Bucket Challenge” was one of the most effective social media fundraising campaigns of all time. The Ice Bucket Challenge was a social phenomenon that engaged millions of people, including celebrities of all types. The campaign raised $115 million, and catapulted ALS research to new levels. You can learn more about the advancements in ALS due to the Ice Bucket Challenge here on the ALS Association website.
To celebrate the 5 year anniversary of the Ice Bucket Challenge and continue the fight against ALS, the ALS Association started the Challenge Me campaign. My challenge is to visit 30 MLB ballparks in a season.
What is your challenge? How can you push yourself beyond your boundaries? You can start by joining me in this mission.
Please visit challengelarry.org to donate and help us find a cure for ALS – and don’t forget to request a match from your employer, if you’re at a company that offers matching donations to nonprofits as part of the employee benefits package.
We all know that our time here is limited. We often spout phrases like “Carpe Diem” and “stop and smell the roses,” but the reality is that we live in a fast-paced world with many things competing for our time. I know in my case the hectic pace of life got in the way of the truly important things far too often. My faith, my family, and my relationships have always been important to me, but hearing that diagnosis made me realize that I could be doing a better job at making the most of the time I have been given. I’m more than half-way through my journey, and I’m grateful for the opportunity to make memories with my family while using my time and resources to make an impact against ALS.
I am lucky because my diagnosis woke me up to the fact that I still have time to make a difference – and you can, too!
Follow me on the rest of my journey: donate, volunteer with your local ALS chapter, or see the stories of people I’ve met along the way on Instagram at @larrychallengeALS and Twitter at @lfchallengeALS. I look forward to seeing some of the Salesforce community along the way.
For more inspiration on nonprofits using Salesforce to advance health and wellness causes, read the stories here.