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, because there are so many other great things I still need to accomplish and enjoy. 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. The following three areas have remained my focus since our ALS journey started:

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

The pie chart to the right outlines the impact the StayStrong has had since its launch in 2018. We reached the $10 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 just 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, today, more than 30 great grandchildren with more on the way. At the time of our last family gathering, there were 99 direct descendants of my parents with one on the way. They’re 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 can 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. As a senior, 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. 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 visiting many places such as, Peoria, Illinois; San Francisco, California; Johannesburg, South Africa; Geneva, Switzerland; Raleigh, North Carolina; Singapore; and then back to Peoria, Illinois. 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 36 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 six new members to the family, a daughter, two sons-in-law, and three grandsons. Being a grandparent (or Papa as they call me) is one thing in life that is not overrated. My grandchildren Cole, Eli, and Leo 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 me alone) from 1,000 patients and 100 controls onto one platform. Once complete, we are opening it up to the world to see if they can unlock the mystery of ALS.
  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.
“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 announcement 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.

“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 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 crowded; in the early days it was seven kids in a two-bedroom, one-bath house, but we had a warm place to sleep, plenty to eat, a strong faith and we knew we were loved. We are a family of strength and numbers – for my Mom and Dad, the seven kids led to 23 grandkids and, today, more than 30 great grandkids with more on the way. At the time of our last family reunion, there were 84 direct descendants of my parents and all 84 showed up.


Education

Ed’s Story:

Education

Upon graduating from Pilot Grove (population 701) High School, I went 30 miles down the road to the University of Missouri. It was a good combination that worked for me – a great university and close enough to home to work on the farm on weekends and summers. I started college with a plan to be a high school basketball coach but switched my major to finance after my freshman year. Professor Bunge convinced me I could always coach as a volunteer; he felt I should push myself to do more.


Caterpillar Years

Ed’s Story:

Caterpillar Years


As always is the case, time went too fast and, before I knew it, I was a senior at Mizzou going through the job interview process. With a finance degree a lot of the interviews were with banks, but I was most intrigued by an opportunity at Caterpillar, primarily due to their global footprint. I’m not sure what piqued 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 with stops along the way in Peoria, Illinois; San Francisco, California; Johannesburg, South Africa; Geneva, Switzerland; Raleigh, North Carolina; Peoria, Illinois; Singapore; and then back to Peoria, Illinois. Through the process, I was blessed with new and challenging opportunities that led me to become a member of the Caterpillar Executive Office.
Throughout my career, I have also been very focused on balance: having a great career, but also a great personal life. And, 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 went in to buy a new car in 1981, and I’ve now been married to the loan officer for 35 years – 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.” And while there were challenges with moving around, when we get together as a family and reminisce about our days abroad, the one word that never comes up is “sacrifice.” We’ve also since added four new members to the family – Katy, our daughter-in-law, Cole, our first grandchild, Ryan, our son-in- law, and Eli, our second grandchild. Our youngest daughter, Stef, also just got engaged; so come next September, we’ll be a family of ten. This is one more reason to keep fighting the good fight. We have been so blessed and have enjoyed the journey every step of the way – no regrets.

Areas of Focus

Ed’s Story:

Areas of Focus


Throughout my career at Caterpillar, I learned firsthand that, as leaders, often times 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 on three key areas: 1) Answer ALS, which is the most comprehensive study of its kind in the world of ALS. We are loading large amounts of data (5 billion data points on me alone) from 1000 patients onto one platform and then opening it up to the world to see if they can unlock the mystery that is ALS. 2) We are focused on bringing better assistive technology to those that suffer from the disease. Roughly 95 per cent 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) And 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 – making a plan, improved 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. I recorded a live version on March 15, 2016, that is available under the “Balance” section of this website, and there is supporting material as well. I remain a student of what it takes to strike great balance in life and share my journey when opportunities arise. The key message is at some point life throws all of us a curve ball and the time to start preparing is not when it leaves the pitcher’s hand.


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, we knew we had to remain calm and provide the organization great clarity of direction. It served us well through an incredibly difficult 2008/2009, and I will forever consider the performance of the Caterpillar team during this challenging period as their all-time great performance.

With the ALS diagnosis, we just decided it was another time when we needed to Stay Strong. As I address audiences and discuss my challenge at hand, I remind them that at some point in time, life throws all of us a curveball – 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 and every day. As time has gone on, I have adjusted my message from Stay Strong vs. ALS to just Stay Strong. Yes, my challenge is ALS, but everyone faces challenges of his/her own. And at the end of the day, we won’t be measured by the announcement, event or even the diagnosis. We’ll be measured 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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