Ed Rapp, Stay Strong vs. ALS

Our Mission

Join the ALS fight by raising awareness and securing the funding needed to support those in search of a cure and bring better assistive technologies to those suffering from the disease.

Updates

Since my ALS diagnosis in 2015, I provide periodic updates on my journey. I am not a daily blogger as you have other priorities and I am keeping busy. However, I do have a sense of obligation to keep those “in my corner” updated on life’s journey.

 

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Impact

On an annual basis I’ll update the impact section to give you an understanding of the impact we are collectively having on this tough disease. This summarizes where we ended 2023 – we continued to make progress. The following three areas have remained my focus since our ALS journey started:

  • Support those in search of a cure
  • Bring better assistive technologies to those that suffer from the disease
  • Support my hometowns of Peoria, Illinois and Raleigh, North Carolina through participation in annual ALS Walks

The pie chart outlines the impact StayStrong has had since its launch in 2016. The impact is approaching the $18 million mark. This includes funds directly contributed to the areas of focus, combined with matches generated by our contributions.

While I expect this number to continue to grow, a good portion of contributions came from colleagues and friends after learning of my diagnosis. The top two recipients of funds to date are Project Answer ALS and the OSF endowment.

The contribution that goes beyond the dollars is the gift of time, especially in my role with Answer ALS where I serve as the Chair of the Advisory Board. However, one thing that remains clear to me is none of this is possible without the great support from so many of you.

Ed’s Story:

Family


I feel very fortunate to have been blessed with an incredible life. I’m one of seven kids. I have three older brothers and three younger sisters. As I always explained to my mom, I am the neglected middle child. Her response was always the same, “With seven kids, you are all neglected, get over it.” The reality is there was no neglect. I loved my life growing up. Yes, it was a bit overcrowded, but we had a warm place to sleep, plenty to eat, a strong faith, and we were loved. We are a family of strength and numbers. For Mom and Dad, seven kids led to 23 grandchildren and more than 49 great grandchildren. We had a family gathering in 2021 and of the 103 descendants that time, all 103 showed up. In leadership and life, showing up matters.  My family is a big part of my support network.

“Showing up matters”

Ed’s Story:

Education


Upon graduating from Pilot Grove High School, I went 30 miles down the road to The University of Missouri. Attending Mizzou was a great decision, because not only was it a great university, it also allowed me to be close to home where I worked on the farm. I started college with the initial plan to be a high school basketball coach, but switched my major to finance after my freshman year. My professor, Mr. Bunge, strongly believed that I could do so much more. He told me I could always coach as a volunteer.

“I started college with a plan to be a high school basketball coach…”

Ed’s Story:

Caterpillar Years

As always, time went too fast and, before I knew it, I was a senior at Mizzou. I began my job search and going through the interviewing process. I had my degree in finance so, many of my interviews were with banks but I had more interest in industry. I was instantly intrigued by the opportunity at Caterpillar and their global footprint. I’m not sure what sparked my global interest, coming from a small town in central Missouri, but when I asked the recruiter the question, “Can you really experience the globe working for a company like Caterpillar?” His answer sealed the deal for me. He said, “Young man, Caterpillar is a company where, if you work hard and apply yourself, you can see the world and get paid to do it.” That is exactly what I did for my 37-year career. While working at Caterpillar, I had the pleasure of living many places such as, Peoria, Illinois; San Francisco, California; Johannesburg, South Africa; Geneva, Switzerland; Raleigh, North Carolina; Singapore; and then back to Peoria, Illinois and traveling to more than 100 countries. This experience brought me new and challenging opportunities that led me to become a member of the Caterpillar Executive Office.

During my career, I was very focused on balancing my profession and my personal life. While I take great pride in my career at Caterpillar, it pales in comparison to the pride I take in what Ann and I have created in our personal lives. I met Ann in 1981 when I bought a new car. She was my loan officer at the time, and now, we have been married for more than 40 years. It was the best loan I ever took out! As we moved around the world, it allowed our three kids, Jay, Ali, and Stef to also see the world. Moving around brought along many challenges, but when reminiscing about the times spent abroad with my family, they make up for it.

We’ve also since added seven new members to the family, a daughter-in-law, two sons-in-law, and four grandsons. Being a grandparent (or Papa as they call me) is one thing in life that is not overrated. My grandchildren Cole, Eli, Leo and Brody are a big part of my therapy and give me the strength to continue fighting the good fight. We have been so blessed and have enjoyed the journey every step of the way with no regrets.

“See the world and get paid to do it”

Ed’s Story:

Areas of Focus

Throughout my leadership position at Caterpillar, I learned firsthand that, as leaders, often our challenge is “our eyes are always bigger than our stomachs.” We tend to take on too many initiatives and, as a result, aren’t as successful as we could be in focusing on the few things that can make the biggest difference.

While there are so many great efforts underway in the world of ALS, we have decided to focus our efforts on three key areas:

  1. Answer ALS, the most comprehensive study of its kind in the world of ALS. We are loading large amounts of data (5 billion data points on each patient) from 1,000 patients and 200 controls onto one platform and then providing open access to anyone doing ALS research in the world. At year-end 2023, there are more than 300 research projects running around the world utilizing our data. The intent of the project is to prove the hypothesis that there is not one form of the disease, there are a number of sub-groups.  Until we determine the sub-groups and related pathways, any drug trial will be a shot in the dark.
  2. We are focused on bringing better assistive technologies to those that suffer from the disease. Roughly 95% of ALS patients opt not to go on a ventilator because they have no quality of life. Surely, with the technology that is available today and being developed in the future, we can bring better assistive technology to serve those that suffer from ALS. In this area I leverage the great work going on at OSF in Peoria and the passionate people at Team Gleason who provide amazing support to the ALS community.
  3. Lastly, as I was taught by my parents, you never forget where you come from. We continue to support the local ALS Associations in Raleigh and Peoria to enhance their efforts to help local families that are dealing with the challenges of this disease.
“Our eyes are always bigger than our stomachs.”

Ed’s Story:

Balance

My discussion focuses on three key steps. These steps are, planning, improving efficiency, and being a corporate athlete. Balance has served me well through my life, allowing me to have both a great career and great family. On March 15, 2016, I recorded a live version of my presentation that is available under the “Balance” section of this website. I remain a student of what it takes to strike great balance in life and share my journey when opportunities arise. The main message is that at some point, life throws us a curveball and the time to start preparing is not when it leaves the pitcher’s hand. I also took advantage of the increase in free time from the pandemic and put many of these thoughts down in writing. In late 2022, we published “The Flywheel of Life and Leadership”. It is available on Amazon and Barnes and Noble.

“My discussion focuses on three key steps…”

Ed’s Story:

Stay Strong

You will consistently see me reference “Stay Strong” as a key theme of the challenge at hand. Stay Strong was originally born out of the Global Financial Crisis. In a period of great uncertainty during my years at Caterpillar, we knew we had to remain calm and provide the organization great clarity of direction. It served us well through the incredibly difficult years of 2008 and 2009. I will forever consider the performance of the Caterpillar team during this challenging period as their all-time great performance. After my ALS diagnosis, we decided it was another time we needed to Stay Strong. As I address audiences, and discuss my challenges at hand, I remind them that at some point in time, life throws all of us a curveball such as, illness, loss of a loved one, relationships, loss of a job, and that the time to start preparing for this is not when it’s leaving the pitcher’s hand. It’s how we live and lead each day. As time has gone on, I have adjusted my message from Stay Strong vs. ALS to simply Stay Strong. Yes, my challenge is ALS, but everyone faces unique challenges. At the end of the day, we won’t be measured by the announcement, event, or even the diagnosis. We’ll be measured (graded) by how we respond, and I just want a passing grade.

“We won’t be measured by the event but by how we respond.”

Family

Ed’s Story:

Family

I feel very fortunate to have been blessed with an incredible life. I’m one of seven kids. I have three older brothers and three younger sisters. As I always explained to my mom, I am the neglected middle child. Her response was always the same, “With seven kids, you are all neglected, get over it.” The reality is there was no neglect. I loved my life growing up. Yes, it was a bit overcrowded, but we had a warm place to sleep, plenty to eat, a strong faith, and we were loved. We are a family of strength and numbers. For Mom and Dad, seven kids led to 23 grandchildren and more than 40 great grandchildren. We had a family gathering this past summer and of the 103 descendants, all 103 showed up. In leadership and life, showing up matters.  My family is a big part of my support network.


Education

Ed’s Story:

Education

Upon graduating from Pilot Grove High School, I went 30 miles down the road to The University of Missouri. Attending Mizzou was a great decision, because not only was it a great university, it also allowed me to be close to home where I worked on the farm. I started college with the initial plan to be a high school basketball coach, but switched my major to finance after my freshman year. My professor, Mr. Bunge, strongly believed that I could do so much more. He told me I could always coach as a volunteer.


Caterpillar Years

Ed’s Story:

Caterpillar Years


As always, time went too fast and, before I knew it, I was a senior at Mizzou. I began my job search and going through the interviewing process. I had my degree in finance so, many of my interviews were with banks but I had more interest in industry. I was instantly intrigued by the opportunity at Caterpillar and their global footprint. I’m not sure what sparked my global interest, coming from a small town in central Missouri, but when I asked the recruiter the question, “Can you really experience the globe working for a company like Caterpillar?” His answer sealed the deal for me. He said, “Young man, Caterpillar is a company where, if you work hard and apply yourself, you can see the world and get paid to do it.” That is exactly what I did for my 37-year career. While working at Caterpillar, I had the pleasure of living many places such as, Peoria, Illinois; San Francisco, California; Johannesburg, South Africa; Geneva, Switzerland; Raleigh, North Carolina; Singapore; and then back to Peoria, Illinois and traveling to more than 100 countries. This experience brought me new and challenging opportunities that led me to become a member of the Caterpillar Executive Office.

During my career, I was very focused on balancing my profession and my personal life. While I take great pride in my career at Caterpillar, it pales in comparison to the pride I take in what Ann and I have created in our personal lives. I met Ann in 1981 when I bought a new car. She was my loan officer at the time, and now, we have been married for more than 37 years. It was the best loan I ever took out! As we moved around the world, it allowed our three kids, Jay, Ali, and Stef to also see the world. Moving around brought along many challenges, but when reminiscing about the times spent abroad with my family, they make up for it.

We’ve also since added seven new members to the family, a daughter-in-law, two sons-in-law, and four grandsons. Being a grandparent (or Papa as they call me) is one thing in life that is not overrated. My grandchildren Cole, Eli, Leo and Brody are a big part of my therapy and give me the strength to continue fighting the good fight. We have been so blessed and have enjoyed the journey every step of the way with no regrets.

Areas of Focus

Ed’s Story:

Areas of Focus


Throughout my leadership position at Caterpillar, I learned firsthand that, as leaders, often our challenge is “our eyes are always bigger than our stomachs.” We tend to take on too many initiatives and, as a result, aren’t as successful as we could be in focusing on the few things that can make the biggest difference.

While there are so many great efforts underway in the world of ALS, we have decided to focus our efforts on three key areas:

1) Answer ALS, the most comprehensive study of its kind in the world of ALS. We are loading large amounts of data (5 billion data points on each patient) from 1,000 patients and 200 controls onto one platform and then providing open access to anyone doing ALS research in the world. At year-end 2021, there are more than 175 research projects running around the world utilizing our data. The intent of the project is to prove out the hypothesis that there is not one form of the disease, there are a number of sub-groups.  Until we determine the sub-groups and related pathways, any drug trial will be a shot in the dark.

2) We are focused on bringing better assistive technologies to those that suffer from the disease. Roughly 95% of ALS patients opt not to go on a ventilator because they have no quality of life. Surely, with the technology that is available today and being developed in the future, we can bring better assistive technology to serve those that suffer from ALS.

3) Lastly, as I was taught by my parents, you never forget where you come from. We continue to support the local ALS Associations in Raleigh and Peoria to enhance their efforts to help local families that are dealing with the challenges of this disease.



Balance

Ed’s Story:

Balance


My discussion focuses on three key steps. These steps are, planning, improving efficiency, and being a corporate athlete. Balance has served me well through my life, allowing me to have both a great career and great family. On March 15, 2016, I recorded a live version of my presentation that is available under the “Balance” section of this website. I remain a student of what it takes to strike great balance in life and share my journey when opportunities arise. The main message is that at some point, life throws us a curveball and the time to start preparing is not when it leaves the pitcher’s hand. I also took advantage of the increase in free time from the pandemic and put many of these thoughts down in writing. In early 2022, we will be publishing, “The Flywheel of Life and Leadership”.


Stay Strong

Ed’s Story:

Stay Strong


You will consistently see me reference “Stay Strong” as a key theme of the challenge at hand. Stay Strong was originally born out of the Global Financial Crisis. In a period of great uncertainty during my years at Caterpillar, we knew we had to remain calm and provide the organization great clarity of direction. It served us well through the incredibly difficult years of 2008 and 2009. I will forever consider the performance of the Caterpillar team during this challenging period as their all-time great performance. After my ALS diagnosis, we decided it was another time we needed to Stay Strong. As I address audiences, and discuss my challenges at hand, I remind them that at some point in time, life throws all of us a curveball such as, illness, loss of a loved one, relationships, loss of a job, and that the time to start preparing for this is not when it’s leaving the pitcher’s hand. It’s how we live and lead each day. As time has gone on, I have adjusted my message from Stay Strong vs. ALS to simply Stay Strong. Yes, my challenge is ALS, but everyone faces unique challenges. At the end of the day, we won’t be measured by the announcement, event, or even the diagnosis. We’ll be measured (graded) by how we respond, and I just want a passing grade.



The story behind the journey

Life was good; a great family, working for a great company and in a position where I could really make a difference.

 

Unfortunately, on November 5, 2015, life threw us a curve ball – I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.

 

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