November 5, 2024
Nine years ago today we dealt with the harsh reality of an ALS diagnosis. While I was hopeful from the start, I have to admit I would not have thought that nine years later, we would be dressing up for Halloween (you have to maintain a sense of humor) with our five grandkids. It was just another reminder that while life has its many challenges, it also has its many blessings.
On my health, I am staying strong. Yes, mobility gets more difficult each day, but I am still on my feet. On the research front, we are getting close to finishing the build out of Answer ALS, researchers around the world are utilizing the one of a kind asset and we are starting to engage the AI and Machine Learning community. I remain hopeful that we can play a part in starting to unravel the mystery behind the disease.
That’s all for now – onward to year 10. Stay strong. Ed
Pictured left to right: Dinosaur Rider (Leo), Jovie (Ann), Pumpkin (Charlotte), Buddy the Elf (Ed), Referee (Eli), Sumo Wrestler (Cole), Buzz Lightyear (Brody)
You stay strong and I will do the same.
June, 2024
It’s been an emotional 10 days – starting off with a trip “home” to Geneva (for work) with Ann (for shopping) and ending with a few days in New York to meet the newest addition to the family. There is nothing I have enjoyed more since diagnosis than hanging out with “Da Boys” but life just got better with the addition of Charlotte Ann Pera, our first granddaughter. It gives me one more reason to keep pushing.
On the health front, summer is my favorite time of year. Between time in the pool and on my three wheeled bike I not only get in great workouts but also enjoy the great outdoors. All in all, my health is good and I continue to be an outlier in the typical ALS journey.
In trying to make a difference in what is a tough disease, I remain engaged. Over the past year I have supported a Public/Private partnership involving Pharma, the Foundation for NIH, NIH and non-profits to launch a project called AMP ALS. It builds off work done at the NIH in other disease states and will leverage the asset created by Answer ALS. In the simplest of terms, there is a growing belief that ALS is not one disease but multiple sub-groups. Efforts like Answer ALS and AMP ALS are building the data and bio-fluid repositories needed to start to unravel the mystery behind the disease. The world of Machine Learning and Artificial Intelligence will play a key role.
That is all for now. You stay strong and I will do the same. Regards, Ed
You stay strong and I will do the same.
November 5, 2023
Please humor me with this update being a bit longer than normal. Eight years ago today, after spending three days at the Mayo Clinic, Ann and I were driving home on a dark and rainy night, trying to come to grips with the reality of an ALS diagnosis. While we had only been exposed to the disease from a distance and had a lot to learn, the doctor did provide the essential direction — two to five years to live and a heavy burden on the family relative to caregiving.
From time to time, I reflect on that drive from Rochester to Peoria, not in a remorseful way regarding the diagnosis but in a thankful way as to how it has played out for me. With every step I take, I am reminded of the disease; however, I never lose sight of my many blessings. Over the past eight years, I have walked two daughters down the aisle, watched all four grandsons take their first steps, played some of the great golf courses in the world, helped build a development business, spent quality time with family and friends and perhaps made a small difference in the world of ALS. No, this is not a path I would have chosen; but, while faced with challenges, I primarily stay focused on the many positive aspects of life.
I recently traveled to Johns Hopkins for a complete checkup. Measures of both strength and breathing capacity were good, but spasticity and mobility remain the biggest challenges. The hardest part of the visit was accepting the fact that I needed to order a wheelchair, not for everyday use but when going a long distance or in a crowd, it is a safety precaution I now should take.
On the research side of things, the Stay Strong impact on research and assistive technologies has exceeded $17M through the support of so many. While in the early days my focus was on impacting the disease for the next generation, the combination of progress and the slow advancement of my disease does give me some hope. Yes, it is a long-shot, but a kid from Pilot Grove, Missouri, did end up in the Executive Office of one of the great companies in the world so who knows what can happen?
A big part of my protocol is quality time with “Da Boys.” They cut me no slack on my mobility challenges. We recently attended “Grandparents’ Day” at the boys’ school. Eli‘s teacher sent us the attached photo. The sign on the window behind me was a great reminder for the journey ahead.
You stay strong and I will do the same.
August 26, 2023
Just a quick update as summer draws to a close. On the health front, no major change which is good. I am still hobbling around with the help of my two Cat designed armed crutches. Strength and breathing capacity are good.
On the research front, Answer continues to gain momentum and the Foundation for the NIH is looking to build on Answer by gathering additional data and samples. Consensus is growing that a major breakthrough in ALS will involve big data, human based samples and the application of machine learning and AI.
My favorite part of the summer is hanging in the pool with “Da Boys”. It is the one place where I don’t have to worry about balance or falling. It kind of makes me sad that my little buddies are heading back to school.
That’s all for now. You stay strong and I will do the same.
May 25, 2023
I’ve received a couple emails in the last week just checking in. When I don’t provide updates people just get concerned that things are not going well. I have always just tried to strike a balance between providing updates while not over communicating.
All is well on my end. Yes, I feel the disease moving but not to the point that it’s affected my lifestyle. Over the last few weeks we’ve had the opportunity to celebrate 40 years of marriage in the Caymans with the entire family, give the commencement address at the college of business at Mizzou and host dinner at our home celebrating the retirement of Michael Heidemann, the CEO of Zeppelin, surrounded by dear Caterpillar and dealer colleagues followed by a great day at Caterpillar. These events highlight that while yes, life has many challenges, it also has so many blessings.
On the battle to make a difference in what is a tough disease, yes, there is a long way to go but yes, we continue to build momentum. Who knows, maybe we will get this thing figured out which would make for one heck of a story.
That’s the quick update. You stay strong and I’ll do the same.
March 5, 2023
I just finished spending time in Baltimore for three things. First, attending the Packard Center’s annual symposium that brings ALS researchers together from around the world. Second, an Answer ALS board meeting, and lastly, a check up at Johns Hopkins.
On the check up, even though we are more than seven years into this disease, my strength and breathing capacity continue to be strong. The biggest challenge remains spasticity or stiffness, which makes mobility difficult, but I am still on my feet and thankful for each and every day.
On the Packard Symposium and Answer ALS Board meeting, I was encouraged by the possibilities, including for the sporadic form of the disease which I have. The advancements in science are amazing. They can create my motor neurons in a dish, see the defect that may be causing the disease, and are testing different possible treatments in the dish. We are a long way from moving from the dish to a human trial, but it does give me hope.
In the meantime, “Da Boys” remain a big part of my daily therapy. You stay strong and I will do the same. Regards, Ed
November 5, 2022
It’s not that I don’t get frustrated from time to time. I am reminded of ALS with every step I take, having to think, “right foot; left foot.” However, as I reflect back on November 5, 2015, after having been told I had two to five years to live, if someone had said that seven years later I would still be on my feet with good breathing capacity, I would have taken it in a heartbeat.
Yes, life has its many challenges but also its many blessings. I’ve watched all four grandsons take their first steps, walked two daughters down the aisle, played some of the world’s great golf courses, built a development business with our son and spent countless hours of quality time with family and friends. I have also been given the purpose of trying to make a difference in what is a tough disease, and progress is being made.
Never on this journey have I felt alone. So, on the seventh anniversary of my diagnosis, a sincere thank you to all of you who have never left my side. When I was diagnosed, the doctor told me, “This is a tough disease; you will need a strong support network.” I told him, “We have that one covered.”
Thanks so much for all you do. You stay strong, and I will do the same. Regards, Ed
September 17, 2022
I have never wanted to bother you with frequent updates but do feel compelled to provide an update from time to time. In this update, just a few comments on three areas.First on the health front, I am staying strong. Yes, mobility is getting more difficult but I am still on my feet. Life is good.
Second, I recently participated in the ALS walk in Peoria. It was a great stroll down memory lane with the opportunity to reconnect with so many dear friends who continue to lend a hand as we try to make a difference in what is a tough disease.
Lastly, my pandemic project was to write a book and it was more difficult than I anticipated. However, the “Flywheel of Life and Leadership” is now released in paperback with the hardback coming shortly and available on the major platforms. It is heavily influenced by my 37 years at Caterpillar and how the lessons learned also apply to taking on the world of ALS. All proceeds from the book are going to Answer ALS.
I have no vision of this being a bestseller but do like to pass on lessons learned to the next generation. As the picture below shows, I’m passing some of those traditions on my grandsons .
You stay strong, I’ll do the same. Regards, Ed
April 26, 2022
I received an email last week with concern about my overall health as I haven’t sent out an update for a number of months. I’ve always been reticent to fill up your time with updates from my end, however, the ALS walk in Raleigh this past weekend along with that note of concern prompted me to provide this update.
In life and leadership, showing up matters. As the attached photo indicates, even though we hadn’t been together for three years due to the pandemic, colleagues ranging from family, friends, Caterpillar, and Gregory Poole “showed up” for the Triangle Walk to Defeat ALS. It reminded me of the discussion with the doctor when originally diagnosed. He said, “this is a tough disease. You are going to need a strong support network”. I told him, “we have that one covered”.
On the health front, other than a continuing decline in mobility, I am staying strong. I continue to dedicate considerable time to the world of ALS, focused on care and a cure. The walk on Saturday was all about care for people in the greater Raleigh area that suffer from the disease.
On the cure front, we continue to make progress with Answer ALS with more than 200 research projects running around the world utilizing our data. I’m also working with Johns Hopkins on a recent discovery of a new pathway that could affect people with the sporadic form of the disease, which I have. While there is a lot of heavy lifting ahead, the journey is not without hope.
That’s all for now. You keep pushing and I will do the same. Regards, Ed
November 5, 2021
It is hard to believe – six years since diagnosis. Ironically, without an ALS diagnosis I would be preparing to retire from Caterpillar. While this is not the path I would have chosen, it is a path that along with it’s challenges, has many blessings. On the last anniversary I laid out my priorities for the year so I thought I would do a quick report out. I guess you can consider it my annual performance review 🙂
- Continue to adhere to a disciplined protocol and stay on my feet. My strength and breathing capacity have stayed strong. While I need the assistance of two arm crutches, I am still on my feet.
- Provide thoughtful leadership to Answer ALS and play a positive role in the ALS community. While this link (https://www.packardcenter.org/news-and-media/news/2021/07/als-pathology-linked-to-defects-in-the-cell-nucleus) is more science than you want it shows the type of research that is being supported by Answer ALS. Dr. Rothstein is also my doctor. There are more than 140 research projects running using Answer ALS data.
- Spend quality time with family and friends including Sunday golf with Jay and Cole. In many ways the last six years have been some of the best in my life and I continue to play nine holes of golf on Sunday with Jay and Cole.
- Remain actively engaged in business through boards and growing the development business. At times Ann wonders if I am really retired which is a good thing. I enjoy remaining actively engaged in the world of business.
- Write a book (I figured if I stated it publicly I would get it done). The book on life and leadership is with the editor. I have no vision of it being a best seller but at least my thoughts are down in writing.
In closing, when diagnosed, the doctor told me, “this is a tough disease, you will need a strong support network.” My response was, “I think we have that one covered.” This past summer we had a family reunion. Of the 103 members of the family, all 103 showed up. In life and leadership, showing up matters.
That’s all for now. You stay strong and I’ll do the same. Regards, Ed
July 1, 2021
While I have never been referenced as an activist, I guess in the world of ALS it is OK. Stay Strong.
A doctor, a researcher and an activist: Perspectives on how sharing data is advancing health care
You stay strong and I’ll do the same. Ed
May 18, 2021
It has been awhile since my last update. Just wanted you to know I am staying strong and am still on my feet. On the work we are doing on Answer ALS, I’ll let the attached video tell the story.
You stay strong and I’ll do the same. Ed
January 8, 2021
To say 2020 and the start of 2021 has been a challenge would be an understatement. We’ve had to deal with a horrible pandemic, justified calls for social justice and political unrest that illustrates just how divided we are as a country. However, one thing this disease has illuminated for me is the fact that at some point in time everyone deals with adversity and in no time like the present has this become more evident. But, it has also highlighted that none of us will be measured by events, occurrences, pandemics or a diagnosis. We will all be measured by how we respond and in these uncertain times so many have responded so well.
The doctors, nurses, people who deliver goods and services to our homes, teachers and parents who adapted to virtual learning and factory workers who show up as there was no option to work from home and more. I also want to recognize the dedicated people working on Answer ALS who are trying to make a difference in what is a tough disease. Today, to celebrate Stephen Hawking’s birthday, we are launching our new portal that was built with great support from Microsoft and releasing additional data to the world for free. It is already the richest ALS data set ever gathered and released to the world and there is more to come. There are more than 80 research projects underway utilizing Answer ALS data and we expect that to increase dramatically with the new Data Portal. The link will give you a good feel for what I have been working on. Click here.
No, it’s not selling tractors but it’s good work and provides a strong sense of purpose especially during these uncertain times. In my free time, we just hang with “Da Boys “. All the best for 2021.
You stay strong and I’ll do the same. Ed
November 5, 2020
Five years ago today, I was concluding three days of testing at the Mayo Clinic when my wife and I were summoned to the office of the Head of Neurology. When we arrived for our appointment, the doctor asked me if I knew why I was there. I told him yes, I was there for him to explain what was going on. He said, “I’m here to tell you that you have ALS.” Many things from that conversation are a bit cloudy in my memory, but there is one part that remains crystal clear: “You have two to five years to live.”
From the beginning I never bought into his time frame. I do not know if it was a strong faith or having so much to live for, but I always felt that we would prevail. Here we are five years later: I am still on my feet with good breathing capacity and thanking the good Lord for our many blessings every day. On one side I do get a bit frustrated in not being able to keep pace with our two-year-old grandson, but on the other hand in many ways, the last five years have been some of the best in my life.
In last year’s update I set objectives to 1) continue to adhere to my protocol and stay on my feet, 2) provide thoughtful leadership to Answer ALS and play a positive role in the ALS community, 3) spend quality time with family and friends including Sunday golf with Jay and Cole, 4) remain actively engaged in business through boards and growing the development business and, 5) write a book. I can put a check mark next to 1-4 and am well down the road on the book. As my old boss Bob Sulaski used to say, “Set a stake and run to it.”
A big part of my therapy is time with “Da Boys,” our grandsons. Cole, Eli and Leo keep us busy and the latest add to the team, Brody, gives me one more reason to hang on. Our grandsons bring great joy to our lives.
In closing I would be remiss if I did not thank each and every one of you for all your prayers and support. When I was originally diagnosed, the doctor said, “You are going to need a strong support network.” I told him, “I think I have that one covered.”
You stay strong, and I’ll do the same.Ed
July 26, 2020
It has been a while since my last update because not much has changed which for the most part is a good thing. The combination of the pandemic and calls for social justice are just a reminder that everyone in life deals with adversity at some point in time. This is a great test for all of us as individuals but also as a country.
My health remains good and being quarantined allows me to stay very focused on executing my protocol. Perhaps the most enjoyable part is spending time with the grandsons including nine holes with Jay and Cole every Sunday. It’s just another reminder that life is good.
You stay safe and stay strong. Ed
May 16, 2020
Just a quick update on two important announcements. First, this Answer ALS press release went out earlier this week. Even with the challenges of the Pandemic we continue to make progress. I remain convinced we will make a difference in what is a tough disease.
Secondly, our daughter Ali and son-in-law Ryan announced they are expecting another little boy in October. As the attached video shows, I am having a blast with 3 of “Da Boys”. Can’t wait for the 4th.
Stay safe, stay strong. Ed
April 17, 2020
First of all, I hope you’re all staying safe during these challenging times. On the home front, we are following the directives and staying safe. On Answer ALS, we continue to make progress and I’m spending a lot of time working with Microsoft who is supporting the build of the portal to house and share the mass of data we are gathering. On the health front, I am staying strong but had been missing one element of exercise.
One of the things I miss the most since my diagnosis is the ability to jog and I filled that void by riding a bike for the past several years. However as my gait and balance have become more challenged, the safety risks of a two wheel bike became too great. Recently, I received a three wheel bike from Pon, a Caterpillar dealer in Europe. As the picture shows it’s custom Caterpillar yellow and has allowed me to practice social distancing while riding the bike while our son Jay jogs, while our daughter Ali takes our grandson Leo for walks and while riding bikes with our grandson Cole. I just find being back on the bike incredibly liberating.
One thing I think we have all observed during these challenging times are the kind gestures of people around the world and I so appreciate the gift of being back on the road.
You stay safe, stay strong. Ed
March 7, 2020
I just finished a long week in Baltimore and thought it was a good time for another update. When I use to finish long business trips with Caterpillar I would describe the trips as E&E – exhausting and exhilarating. The same applied to this week.
On the health front, they put me through a full array of tests including measuring strength, breathing capacity, EMG and MRI and the news was good — no change since last visit. The only area I continue to sense a gradual decline is in my gait but the canes developed by the three wise men really do help.
I also spent two full days on Answer ALS including a face-to-face meeting with the 24 research centers and 8 clinical institutions. Instead of typing an update I thought I would just connect you to my opening comments on results to date and areas of focus for 2020. (Click here)
In closing, as the old saying goes, we all find out who are friends are in the toughest of times and Ann and I remain amazed by the support we receive. This support was fully on display at the recent Les Turner Foundation event that we attended in Chicago. As I told the crowd that evening, no, given a choice this is not the path I would have chosen but, it is what it is, and we continue to try and make a difference in what is a tough disease.
You stay strong and I’ll do the same. Ed
December 22, 2019
As Christmas approaches, I thought I would send one last update for the year. While in the Christmas mood, I wanted to pass on a story about three wise men.
My health is staying strong — both breathing and strength are holding steady. My gait remains a challenge, and it has started to impact my back, partly due to the pressure I put on my right side while walking with a cane.
At the suggestion of my physical therapist, I started playing around with walking with two canes to keep myself more upright and centered. However, I found it cumbersome as at times I need a free hand — opening a door or rolling a suitcase — but there was no easy way to do this with two canes. What was called for was the functionality of two canes along with the ability to integrate when I needed a free hand.
My years at Caterpillar taught me to clearly articulate a problem to our engineers and then turn them loose to innovate and problem solve, and that is exactly what I did. I reached out to three retired Caterpillar engineers/leaders, described the challenge and outlined the functional specs. Ann and I then had them over for dinner with their wives to celebrate Christmas.
Each came to dinner with design concepts. After dinner we did a design review and, by the time the evening was over, we had a working prototype that I will test during the holidays before we lock down the design. So a big thank you to Doug Petterson, Bruce Phillips and Reid Waitt – three wise men. The experience was just a reminder of what an old timer at Cat taught me years ago — it’s a relationship business; we just happen to sell machines, engines and parts. And the best part is that the relationships not only span a career, they span a lifetime.
In closing, your prayers and support throughout the year mean so much to us. All the best for the holidays. We plan on spending quality time with family and friends, especially “Da Boys.”
Merry Christmas, Ed and AnnNovember 5, 2019
While an annual celebration of a birthday or wedding anniversary is special, for me November 5th is an anniversary of reflection. Four years ago today, while at the Mayo Clinic, we first heard the words, “You have ALS.” After 37 years with Caterpillar and only two sick days, how do you get a diagnosis where the doctor says, “You have two to five years to live”?
I remember Ann’s asking the doctor out of frustration, “What should we do?” To which he responded, “You should make a list of every place in the world you have wanted to go to and go now.” To which I replied, “I’ve already been there.”
In my retirement speech I outlined my nightly test and it continues to guide me today — did I approach the day with a positive mental outlook including prayer and affirmations? did I clearly demonstrate to Ann and the kids that I am all in in the fight against ALS? and did I in some small way advance the broader cause in support of those working to find a cure? I continue to believe if I answer affirmatively to those three questions, I am going to be just fine regardless of where life leads me.
For the next year my priorities are to 1) continue to adhere to my protocol and stay on my feet, 2) provide thoughtful leadership to Answer ALS and play a positive role in the ALS community, 3) spend quality time with family and friends including Sunday golf with Jay and Cole, 4) remain actively engaged in business through boards and growing the development business, and, 5) write a book on work/life balance (I figured if I stated it publicly I would get it done).
Yes, at times I do get frustrated, especially with my gait, but if four years ago someone had told me, “Your strength and breathing are going to hold and you are going to be on your feet,” I would have said, “I’ll take it.” It simply helps me keep life in perspective — I am blessed.
A big part of that blessing is you. I can honestly sense the support and prayers coming from around the world. That’s all for now. You stay strong and I’ll do the same.
Ed
October 2, 2019
I just finished my checkup at Johns Hopkins, and the results were good: zero change in strength and zero change in breathing capacity. My challenge continues to be spasticity and gait, but the medical team was surprised by how well I am doing. We did talk about options relative to mobility going forward, but for the time being, I’ll continue with the cane (or putter as my grandson calls it). While at times I can get frustrated with my gait, there is not a day that goes by that I don’t thank the good Lord and you for all the support and prayers.
Stay strong – I’ll do the same.
Ed
September 9, 2019
In life and leadership, showing up matters. This past weekend, a combination of family, friends and colleagues showed up to support the 2019 Peoria Walk to Defeat ALS. The team played a crucial role in raising funds that support local families dealing with the challenges of ALS. The final numbers are not in yet, but Team Rapp raised more than $35K, and the Peoria Walk itself raised more than $135K. Ann and I remain committed to this walk as a part of our commitment to our hometown of Peoria.
In addition to trying to make a difference in the world of ALS, I have also been spending quality time with those that make a difference in my life. As you’ll see in this video, my grandson, Cole, has been my golf partner. He highly motivates me to keep playing!
As always, stay strong, and I’ll do the same.
Ed
August 13, 2019
Women in Leadership Discussion: The Power of One to the 5th Degree
Stay strong,
Ed
July 27, 2019
I draw my strength from many sources including my Grandson Leo. He just had his first birthday and in that first year he took on the challenges of open heart surgery, cardiac arrest and more than 50 days in the ICU. Leo is getting stronger every day. I keep telling him the two of us are going to have a heck of a story to tell one day as we overcome the challenges of life.
Stay strong,
Ed
July 16, 2019
They say you can’t go home, but last week told me something different. I spent time in Peoria and spoke at Caterpillar’s Women in Leadership conference. It was a great gathering of global leaders including Caterpillar, dealers, suppliers and customers. I told the group that every time my grandson Cole sees me with a Cat shirt on, he says, “Papa, you going to work?”
At least for that evening, it was fun to be back at work!
Following the conference, I went to Missouri and spent some time with family, including time in my hometown of Pilot Grove. It was a great week, and it felt good to be home!
Stay strong,
Ed
June 17, 2019
I’s been awhile since my last update. Health wise, no change, which is a good thing. Breathing capacity is strong, the challenge is the gait.
The activities of last week provide some insight into the great balance I have in my life.
I spent time with “Da Boys.” Cole, Eli and Leo are a big part of my therapy.
I attended the Caterpillar shareholders meeting in Clayton, N.C. It was a great opportunity to see my former colleagues, including the Board. It is the employees of Caterpillar that I miss the most.
I then participated in a radio interview on Answer ALS. If you want a high level overview of what we are trying to do, this link will take you to the recording: https://www.wypr.org/post/aiming-answers-end-als
Next, I flew to Ohio to play golf with our son Jay and my brother Don at Firestone Country Club and Muirfield Village. Jay and I have now played 33 great golf courses since diagnosis. While getting to the ball is harder and I’ve lost distance, I still enjoy the game.
Then I concluded the week with family celebrating Father’s Day. Being a Dad is the best job I’ve ever had.
I continue to strive to remember that despite the challenges at hand, life is good.
You stay strong, I’ll do the same.
Ed
April 23, 2019
The Raleigh ALS Walk this weekend just prompted me to send a quick update. It is hard to believe this is our 4th walk. Yes, at times I get frustrated with my mobility but in Nov 2015 upon diagnosis if someone would have said I would still be on my feet in April of 2019, I would have taken it in a heartbeat. The best part of the walk was being surrounded by family and friends.
On Answer ALS, we continue to build momentum. As the update in the link indicates we are making good progress and I really do think we will make a difference.
That’s all for now. Until next time, stay strong. Ed
Ed
March 9, 2019
I have just returned from the annual face-to-face Answer ALS meeting that includes the principal investigators for the project from the multitude of organizations working on it. I first engaged in Answer ALS due to the project’s collaborative nature. I remain convinced that great innovation comes from great collaboration. That collaboration was alive and well at the meeting. You could not tell who was from where. It was just a group of passionate people trying to make a difference against what is a tough disease and the progress made over the past year is amazing.
The project has started to release its first round of data. Researchers from around the world can now request data at data.answerals.org. Just two months after reaching the program’s target enrollment of 1000 participants, the release includes whole genome sequence data paired with full clinical profiles from the first 100 participants in the study. As profiles are completed, they will be added until the entire trove of data (5B data points per patient) is available to the global ALS research community. Until we understand the pathways that cause ALS, any drug trial is a shot in the dark.
On the health front I am staying strong. Yes, mobility is a challenge but it isn’t slowing me down. That is all for now. Until the next update, stay strong.
Ed
January 25, 2019
I just finished a full day of testing at Johns Hopkins, so I thought I would send a brief update. My neurologists pulled out his notes from my first visit in late 2015, and since then there has been zero change in my strength and zero change in my breathing capacity. The one thing that has changed is an increase in spasticity, which continues to affect my gait.
He increased my dosage on baclofen, so I’m hoping to see some improvement. I must continue to be more careful. While I do get frustrated with my gait, if someone would have said more than 3 years ago this is where I’d be, I would have taken it in a heartbeat.
Thanks for all your love and support along the way.
Ed
November 26, 2018
I recently attended a “Game Changer” fundraiser in Seattle focused on closing the funding gap to finish project Answer ALS. While it is a tough disease to fight, as the video link demonstrates, we are having some fun as we do it. We also continue to make great progress on Answer ALS. Attached is a summary of milestones to date. We keep pushing.
Take care, and stay strong.
Ed
October 31, 2018
Thanks for being part of the Stay Strong community. As the release linked below says, we are just trying to make a difference in what is a tough disease.
Take care, and stay strong.
Ed
October 11, 2018
I thought I would give just a brief update following a couple interesting weeks.
First, since November 5, 2015, I have prayed and affirmed every day that I walk my daughters down the aisle and dance the father/daughter dance. I had that privilege with Ali last year and with Stef on September 29. While it completed a major milestone, I have more on my list of things to do.
I have also spent time with my neurologist and functional medicine doctors in the past two weeks. In a nutshell, my strength and breathing capacity are staying strong. The one challenge I have is my gait, but it is a challenge I am focused on overcoming.
Finally, the newest addition to the family, our grandson Leo, is now home after an extended stay at Duke Hospital. He is getting stronger every day. I love spending time with “Da Boys” – Cole, Eli and Leo. Your thoughts and prayers have been greatly appreciated.
As the above highlights, we continue to be blessed!
Stay Strong!
Ed
September 13, 2018
It’s been a while since the last update, so I thought I would bring you up-to-date on a number of developments and then close with a special request.
My Health
On the health front. I have fully recovered from the infection/hospital detour and I am staying strong. One change I have made is to move from using a cane to using two walking sticks. I still have good strength in my arms and legs, so they give me good stability and they force me to have a more natural gait vs. leaning on a cane. I consider this change part of the evolution in taking on the challenge at hand.
I also consider it a blessing to still be on my feet, and I was thankful to take part in the Peoria Walk to Defeat ALS. The combined efforts of patients, sponsors and volunteers of the local Chapter of the ALS Association continues to make a difference. In 2015 the Peoria Walk to Defeat ALS raised $51,500. In the past three years, the Walk has raised almost $400,000 to further the mission of the ALS Association in Central Illinois. Participating in the walk is part of my effort to support my hometown of Peoria.
Answer ALS
Answer ALS also continues to build momentum. Through the research program, 1,000 ALS patients (almost 900 already enrolled) across the United States are being monitored for one year. Disease measures, such as breathing function and muscle strength, are being captured at clinical visits. Biospecimens such as blood and cerebrospinal fluid are being collected, allowing for analysis of DNA, RNA, protein and cellular pathways. The initiative will generate more than six billion data points per patient. I describe it as building the haystack, and then we’ll turn it over to anyone in the world doing ALS research as well as new capabilities like Artificial Intelligence (AI) to find the needle — the mystery behind what causes ALS. Without understanding the cause, there can be no cure. I continue to dedicate time, effort and resources to Answer ALS.
Family Endowment
We continue to partner with OSF and the Jump Simulation Center and have created an endowment that brings engineers and doctors together to create assistive technologies focused on ALS. I remain convinced that great innovation comes from great collaboration.
My Request
And now for the special request: On July 22, our family was blessed with the arrival of our third grandson, Leo Christopher Adams. He arrived five weeks early, was born with a heart defect (transposition of the great arteries), had open-heart surgery when he was 10 days old, later went into cardiac arrest and continues to fight each day. Through prayers and support from many of you, Leo continues to gain strength. After 51 days in ICU, he recently moved to the progressive care unit getting him one step closer to going home. I know the Rapp Family has called on you a lot over the past several years, but please keep Leo in your thoughts and prayers.
My next checkup at Johns Hopkins is in early October, so I’ll be sure to provide another update then.
Stay Strong,
Ed
July 13, 2018
It has been a while since my last update; so, I thought I would bring you up to speed on how I am doing.
My Health
On the health front mobility remains my challenge, but strength and breathing capacity are good. Unfortunately, I had a major setback recently. I had been on the new ALS drug, Radicava, for about six months. It is a heavy protocol – 10 days of IV, 14 days off, 10 days on, 14 days off – repeated for the rest of my life. In late June, I contracted an infection through the port that I use for the IV. It put me in the hospital for five days, but now we have things under control. I have since opted not to go back on Radicava. I am always trying to balance quantity of life with quality of life, and I firmly believe following the balance of my protocol and coming off Radicava is the right thing to do.
Answer ALS
Answer ALS continues to build momentum. We have crossed more than 750 patients, and are on our way to 1,000. As data continues to accumulate, our focus has strongly shifted to build out the infrastructure to store the data and build the portal to make it accessible to anyone in the world doing ALS research. We are getting great industry support from the likes of Microsoft and IBM. I continue to heavily invest time and dollars (with your great support) in this project.
Assistive Technologies
We have shifted our focus on Assistive Technologies. We really tried to make a go of an XPRIZE that focused on assistive technologies, but we could not get it up and running in spite of great efforts. XPRIZE is focused on projects that impact many, and the relatively small population of ALS patients simply did not fit their model. We continue to believe in the need; so we have created an Endowment at OSF in Peoria, Illinois. It is a collaborative effort bringing neurologists together with University of Illinois engineers to create assistive technologies. It is also a way for us to support Peoria, which is very important to us.
Other than that, life is good. We are expecting our third grandson in late August, and I am getting ready to walk our daughter, Stefanie, down the aisle in late September. We remain blessed and are thankful for all your thoughts and prayers.
Take care, and stay strong.
Ed
April 25, 2018
As I deal with the challenge at hand, I am always aware of the fact that I am not the only one who has dealt with adversity. So many of you can understand how I felt; and it was evident with the demonstration of love and support from so many at the Raleigh ALS Walk this weekend.
This was my third walk, and I am proud to say I am still on my feet and walked the full 2 miles. I had my training partner, our grandson Eli, with me. I’ve been pushing him in his stroller in preparation for the walk, and the two of us walked every step together today surrounded by great family and friends.
Yes, it gets more difficult to walk, but our grandson Cole helps me keep life in perspective. He was on our trampoline and said, “come on Papa, jump,” to which I said “Cole, it’s hard for me to keep my balance.” Cole looked straight at me and said, “Papa, just do your best.” I am driven by those words of wisdom each day and today, doing our best was supporting the local chapter of ALS.
Keep pushing and Stay Strong.
Ed
March 22, 2018
The following announcement is another step forward for ALS. In my days at Caterpillar, I learned that great innovation comes from great collaboration, and we are seeing it play out in the world of ALS.
Stay Strong,
Ed
March 13, 2018
I just finished three days in Baltimore, which included the annual Answer ALS meeting, a checkup at Johns Hopkins, a visit with my functional medicine doctor and an Answer ALS Advisory Board Meeting.
My checkup went well – the prayers and protocol are working. Since my last visit in early November, there has been no change in my functional rating score, strength or breathing capacity. The only area that has progressed is spasticity, which I could sense going into the visit. While I am still on my feet, I do use a cane when out in public. I continue to work with my functional medicine doctor on ways to improve my gait, so I haven’t given up. All in all, I feel good about the results.
Answer ALS continues to take a considerable chunk of my time, but it is time well spend. I truly believe in the project, and we continue to make good progress. We are approaching 700 patients enrolled in the program and starting to build the data infrastructure to allow the analytics to begin. We are also getting great support from the likes of Microsoft and IBM. Answer ALS is also releasing a video describing the project and Cole has a leading role. Click here to view the video
While the world of ALS does take up a good part of my time, I still start every day with a bike ride while Jay runs, and then I swing by his house to hang with “the boys.” As the photo shows, they are growing up, and I am thankful that I get to be part of it. We have also been blessed with the news that our daughter Ali and son-In-law Ryan are expecting their first child in late August. So, we will have a new grandchild end of August and our daughter Stefanie gets married end of September. In spite of the challenges at hand, life is good. That’s all for now.
Stay Strong,
Ed
January 31, 2018
Since my diagnosis, I have been very reticent to enter any drug trials. Without knowing the pathway that caused the initiation of my ALS, any drug is a bit of a shot in the dark. It’s why I am dedicating my time and resources to Answer ALS (with great support from you), which is focused on this key issue, and we’ve made great progress in 2017.
However, one new ALS drug has been released: Radicava. I’ve had numerous discussions with my neurologist about going on this drug. In general, my progression has remained slow even though I continue to be challenged with my gait and use a cane more and more. One of the challenges with Radicava is the regimen involves: 10 days on an IV, 14 days off, 10 days on an IV, 14 days off, repeated for the rest of your life.
I have now decided to go on the drug, and I started treatment last week. The piece of data that convinced me to proceed was that in the original trial in Japan, patients with a high ALS Functional Rating Score and high Forced Vitale Capacity performed better on the drug, and I meet both these parameters. The other factor that influenced my decision is to continue to demonstrate to my wife, Ann, and the kids that I am all in, in the fight versus ALS. One thing that won’t change is my disciplined execution of my six-point protocol.
I often get asked “how are you doing and what are you up to?” Late last year, I made some comments at a MDA event in Atlanta and summarized my protocol and the role I am playing in the broader world of ALS. As you will see in the following video, the biggest reaction from the crowd was generated by my grandson, Cole.
Take care and Stay Strong.
Ed
November 5, 2017
Today marks the two-year anniversary of my ALS diagnosis, and with my recent visit to Johns Hopkins, I thought it was a good time to provide an update. I apologize for its being a bit long, but there is a lot going on.
My Health
I am pleased to report that my strength and breathing capacity both continue to show good stability. While most with the disease decline on a linear basis, my measurements in these two critical areas have been holding steady. My one challenge remains the same — my gait. When I walk, it is still jerky, and balance is a challenge. My neurologists said this is a function of increasing spasticity (stiffness in the legs). This is an area that I continue to work on, and I have started assessing the use of a cane, especially when I travel. A significant risk is falling, and I really need to be careful.
I have remained disciplined in my execution of my 6-point protocol. I have shared the protocol with many who also suffer from the disease. I often get the following question: is it working? As I assess my progression versus the norm, I have to believe it is.
My Involvement in the Fight to Defeat ALS
Beyond personally fighting the disease, we remain actively engaged in the broader fight. While in Baltimore for my checkup, we also had a face-to-face meeting of the Answer ALS Advisory Board that I chair. The program continues to gain momentum. One of the things that gives me confidence is the exponential rate at which tools to understand the disease have evolved. In 2008, to sequence a human genome cost $1M and took 4 ½ months. Today, the cost is $1,000 and takes one hour. Major scientific breakthroughs in ALS laboratory techniques have also been developed including the ability to grow a patient’s motor neurons from blood to enhance research.
Perhaps the most important advancement has been a far greater level of collaboration between institutions in search of a cure. Answer ALS is just one example. It is a collaboration between eight leading institutions including Johns Hopkins, Mass General, Cedars-Sinai, Ohio State, Emory, Washington University, Texas Neurology and Northwestern. I remain convinced that great innovation comes through great collaboration, and it is happening today in the world of ALS. For those interested in a more detailed update, click here to read the recent Answer ALS Research Program 2nd Quarter Report.
We also remain engaged with projects to bring better assistive technologies to those suffering from the disease through XPRIZE and an endowment we created at the Illinois Neurological Institute. The endowment is focused on bringing University of Illinois engineers together with OSF doctors at the Jump Simulation Center to create better assistive devices.
My Family
While fighting the disease and being involved in the broader cause takes up a fair bit of time, I also get a lot of high-quality time with my family. My wife, Ann, and I are really enjoying our new home. While it was a lot of work, it was worth all the effort. I recently played golf with my son, Jay, at the Bellerive Country Club in St Louis. It is the site of next year’s PGA Tournament. My daughter, Ali, and I traveled to Kansas City to see the Steelers play the Chiefs, and Ali was thrilled with a Steeler victory. My youngest daughter, Stef, and I head to the CMA (Country Music Association) awards in Nashville later this week. It will be my first time to see Stef since her recent engagement to Mike Pera — we are thrilled with the news. And when in Raleigh, most mornings start with a bike ride while Jay runs, followed by time with my two grandsons, Cole and Eli. Life is good!
In closing, your prayers and support are greatly appreciated and really do make a difference. I pray and affirm every day that: I am winning the battle versus ALS. I am the exception and outlive my parents and in-laws, grow old with Ann, walk my girls down the aisle and dance the father-daughter dance. I teach my grandkids to play golf and walk the course the first time Cole beats our son, Jay. Click here to see Cole in action. It all keeps me focused on doing my part as well.
Take care and Stay Strong.
Stay Strong.
October 16, 2017
There have been some exciting advancements recently in the ALS research community through Answer ALS. As indicated in past updates, I am fully engaged with Answer ALS through my involvement ranging from one of the patients, to a financial contributor (with your great support) and now chairman of the Board Advisory Committee. One of the things that drew me to the project was the collaborative nature and the open sharing of data across the ALS community.
Click the announcements below to learn more about the beginning of good things to come as we collaborate in an effort to make meaningful progress in the world of ALS.
- Les Turner ALS Research and Patient Center at Northwestern Medicine Joins Answer ALS
- Answer ALS: Announcement! Researchers Share Unprecedented Milestones!
Stay Strong.
September 26, 2017
Growing up, my parents taught me, never forget where you come from. Ann and I consider Peoria and Raleigh our hometowns. One of our priorities is to support the local ALS Associations. We walked in the Raleigh Walk to Defeat ALS in April and travelled back to Peoria recently to do the same. Through the efforts of some great volunteers and supporters the walk raised more than $120K to support local ALS patients. Team Rapp alone raised nearly $40K.
As the picture shows, Team Rapp was out in full force with more than 130 of the 422 total Walk participants.
Ann and I also partnered with OSF HealthCare and the OSF Illinois Neurological Institute (INI) to announce the Ed and Ann Rapp Family Endowment at OSF, which will support the work of neurologists and engineers in developing tools and solutions that will break down barriers to ALS research and enhance patients’ quality of life. Peoria offers a unique combination to attack this challenge. INI, Jump Trading Simulation and Education Center (Jump) and a partnership with University of Illinois College of Engineering brings unique forces together that can make a difference. Jump serves as the connector, bringing together the collaboration of OSF clinicians and U of I engineers and scientists.
While at Caterpillar, I learned innovation was driven by collaboration and this endowment is all about doctors and engineers collaborating to bring better solutions. ALS is a tough disease, and I remain absolutely convinced that we can create better access to care and research trials to those treating and suffering from the disease. Click here to view a video about the work being done through this unique collaboration between physicians and engineers in the Peoria community.
My next appointment at Johns Hopkins is the end of October. I’ve combined that visit with an Answer ALS Board Meeting. I’ll be sure to provide an update after the visit. In the meantime, Stay Strong.
Take care and Stay Strong.
July 24, 2017
A lot has happened since my last update. I have been keeping a list of gifts and blessings since being diagnosed with ALS and the latest addition to the list is spending quality time with two grandsons. Yes, I said two! I’m excited to announce the most recent addition to our family – Eli Joseph, new baby brother to Cole.
As you can see from this picture, my daily routine hasn’t changed – just enhanced: a morning bike ride with my son, Jay, while he runs and then back to his house with an apple with Cole and quality time with Eli. Life is good!
On the health front, while walking has become more difficult, I continue to fight the good fight and stay active. I spent the last week of June in Europe. While travel is not high on my list of things to do, there were two special occasions I wanted to attend. The first was celebrating the retirement of a great Caterpillar colleague, Paolo Fellin, and attending the 25th anniversary celebration at Zeppelin in Munich, Germany for Michael Heidemann. The trip also gave me a chance to tell our Geneva-based employees how much I appreciate all they did for me. I’ve never forgotten that when I landed in EAME, I was a division manager, and when I left I was a vice president, which was a result based on the support I received from them. My career at Caterpillar led to so many great relationships.
In the world of ALS, I recently agreed to lead the Answer ALS Advisory Board, so now I am a patient, funder (with great support from you) and board member. We’ve enrolled more than 500 patients, with a goal to reach 1,000, and I remain convinced that we must first identify the various pathways that cause ALS, and then and only then, will we get to meaningful drug development.
I also continue to support the local ALS associations in Peoria and Raleigh. They do so much to support patients and families dealing with this challenging disease. I’ll travel back to Peoria for their annual Walk to Defeat ALS on Saturday, September 9th. If you’re in the neighborhood and would like to come out and support the cause, we’d love for you to join Team Rapp. Click here to join Team Rapp.
Take care and Stay Strong.
June 6, 2017
It’s been a while since my last update, so I thought I would update everyone on how I’m doing, and what I’ve been up to lately. In my last update, I mentioned the higher-than-normal levels of toxicity, and I have spent a lot of time over the last three months working with my Integrated Medicine Doctor to bring them down. I just finished another session with him, and I’m happy to report that my toxicity has dropped from 18.2 to 16.4, which is a significant shift. I still have a bit further to go, but I am getting close to normal. We all have more toxicity than we think.
Physically, I do feel the progression, especially in my gait and balance, but I am still on my feet, playing golf and riding a bike. I continue to execute the six-point protocol with great discipline. I am also doing fine mentally, primarily fueled by a strong faith and great network of family and friends. I have come to realize that this is more of a mental than physical battle.
I also remain actively engaged in the world of ALS, primarily through the Executive Committee of ALS Finding a Cure of which I’m a member, working with XPRIZE to raise the prize funds to launch a prize focused on assistive devices and working with Answer ALS as a participant, funder and Board Member. Between these activities, my Board positions, some investments I am involved in with our son and time with family and friends, I am staying busy.
We just started moving into our new home. One of my goals was to “walk” through the front door when it was done. With that accomplished, I plan on enjoying the house and benefits of being so close to family for years to come. My 60th Birthday card from my wife, Ann, said, “I was depressed when you turned 50; can’t believe I am married to a 60 year old; can’t wait to celebrate your 70th”
Even though it’s almost been a year since retirement, I still feel like I am part of the Cat team. The sculpture created by the East Peoria welders and given to me at my retirement celebration is proudly displayed at the new house. When our grandson, Cole, sees a Cat logo, he says “Papa.” I cherish the fact that he associates the brand with me. Cole’s world is also about to change, as Jay and Katy are expecting a second son near the end of June – just one more reason to keep pushing – stay strong.
Take care,
April 27, 2017
With the support of family, friends, more than 150 Caterpillar employees from Building Construction Products and the Gregory Poole Equipment Company, a great group of people came together to participate in the Triangle Walk to Defeat ALS in Raleigh, NC. As a team, we hit our goal of raising $40K to support the local ALS Association and the good work they do. It was the second time I walked in this event and plan on doing it for years to come – God willing.
Stay Strong,
April 5, 2017
Last week, I had the distinct pleasure to be recognized for my work with Junior Achievement (JA), along with Debbie Simon, President and CEO at UnityPoint Health Methodist | Proctor; and Chuck Weaver, entrepreneur as Laureates in the Business Hall of Fame. JA is about empowering young people to own their economic success. Their volunteer-based K-12 programs foster work-readiness, entrepreneurship and financial literacy skills, and use experiential learning to inspire kids to dream big and reach their potential. I’ve been involved with JA for more than 10 years, and throughout my involvement, I truly believe that I gained a lot more in return than I ever gave. It was a humbling experience and as the video shows it was a great stroll down memory lane.
You can also learn more about Junior Achievement here.
Stay Strong,
March 7, 2017
It’s been a while since my last update, and with the conclusion of my recent visit at Johns Hopkins, I thought I would summarize where things stand.
Most importantly, I am staying strong, still on my feet and moving forward. Our house in Cary, NC, is nearing completion. In January, I walked my daughter, Ali, down the aisle and danced the father/daughter dance. We got Stef moved to NY, and Jay and Katy are expecting a second son in June – one more reason to keep fighting. The support and prayers from around the world are so much appreciated.
The results of the series of tests at Hopkins continue to point in the same direction – slow progression, which is great news. While most say there is nothing you can do to fight the disease, I continue to execute a disciplined protocol based on six key components:
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- I’m getting my traditional care through Johns Hopkins
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- I’m working with an integrated medicine doctor, who has picked up on a high level of toxicity in my body, and I am working through a process to bring it down
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- I continue to stick to the Wahls Protocol for my diet
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- I am working with a foundation training specialist to build strength and balance
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- I’m employing acupuncture in an attempt to keep the pathways open
- And most importantly, I continue to believe this is a battle I can win, supported by prayers and affirmations
In addition to fighting the disease, I remain focused on trying to make a difference in the broader context vs. ALS, concentrating on two key initiatives. The first is Answer ALS, which I truly do believe holds the key to understanding the causes of the disease. I participated in a session earlier this week, and we continue to make progress towards the target of loading an incredible amount of data concerning 1,000 patients (more than 400 have already been enrolled) and then putting it on a platform open to anyone in the world wanting to access it to help us unravel the mystery that those who have gone before us have not been able to solve. The engagement with IBM continues to build momentum as part of the project.
And while Answer ALS is focused on the long-term cure, people currently suffering from the disease are in desperate need of better assistive technologies to improve their quality of life. It’s a harsh disease. It leaves the mind, but takes everything else. Through an association with XPRIZE, we are attempting to ignite efforts to bring key assistive technologies (mobility, manipulation, communication and respiration) to market to dramatically improve patient and caregiver independence and quality of life. Through the support of family, friends and the Caterpillar community, we have raised the funds to cover operating costs to launch the campaign, and we are now in the process of fundraising for the prize itself.
Through both Answer ALS and XPRIZE, I do sense we are playing a small, but effective role in moving the ball forward. Between the funds we have dedicated as a family and those provided by Caterpillar and so many of you, we have made investments or commitments totaling more than $5.8 million. I keep a log of the “gifts of ALS,” and your support of Stay Strong is one I appreciate so much.
In closing, my grandson, Cole, is my new golf partner. Click here to see him in action on the driving range or here to see another one of his amazing golf highlights. He continues to demonstrate each and every day that anything is possible. Note the Caterpillar sweatshirt and Cardinals hat 🙂
Stay Strong,
December 24, 2016
On the eve of the birth of our Lord Jesus Christ, I felt compelled to send you a brief note of thanks. When you have a disease where there is no known cause or cure, and yet you still consider 2016 to be a great year, I can only attribute it to the power of your thoughts and prayers. So, thank you so much for all the support you’ve sent my way. I wish you all the best for the holiday season! Enjoy time with family and friends, and always remember the true meaning of Christmas. As you plan for 2017, I’ll ask that you give me the same gift you have blessed me with this year — just keep me and my family in your thoughts and prayers. Lastly, my grandson Cole also continues to demonstrate that anything is possible 🙂 Click here to see him reach new heights.
Merry Christmas,
November 8, 2016
Anniversaries have always been something to celebrate, ranging from birthdays to marriage. They are also events that, in many cases, lead to reflection. Having just come past the one-year anniversary of my ALS diagnosis, I thought I would pass along a more detailed update to let you know where things stand. It is amazing how fast the time has gone.
A key priority for me post diagnosis was a proper transition out of Caterpillar. I feel good about how this has been managed. Denise Johnson is off and running as my replacement, and I’m very proud of Jim Umpleby. I’m confident he will do a great job as CEO. I’m also glad that Dave Calhoun will play a larger role at Caterpillar as Chairman. While I remain engaged and support my Cat colleagues when required, I also know the company is in good hands. My last official act was publishing “Measure Twice, Cut Once,” a book of my lessons learned over my years at Caterpillar, as I simply felt I owed it to the organization.
On my treatment, I continue with a dual-path plan. I’m getting my traditional care at Johns Hopkins and could not be more pleased with Dr. Jeff Rothstein and his team. I am also working with Dr. Ken Sharlin on a functional medicine approach that includes diet and exercise. The combination at this point appears to be working. I just finished my one-year, post diagnosis visit at Johns Hopkins, and my breathing capacity and strength are good. I still have issues with leg stiffness and balance. The most concerning development as of late has been a couple of falls over the last 30 days. I am just going to have to be more cautious. All in all, I am doing fine physically, and all indications continue to point to a slow progression, which is such a blessing. While at this point I am not participating in any drug trials, I am participating in trials to try and better understand and “see” the disease.
We have established staystrongvsals.com and developed clarity around the role we want to play in the world of ALS. One is focused on the long-term cure (Answer ALS), and the other is focused on helping patients who fight this challenging disease (XPRIZE focused on assistive devices). We truly feel these are the right two efforts to dedicate our time, energy and money including the support provided by so many of you.
In addition to treatment and participating in the ALS efforts, I am keeping busy. I enjoy remaining on the board of Abbvie and FM Global. I’m involved with my son Jay on property development in the Raleigh area. We are building a house in Cary, North Carolina and should be in the new home by the end of March. I’m also spending a great deal of quality time with family and friends. A few of the highlights for the past year were a golf trip to Scotland, throwing out the first pitch at Wrigley (especially since the Cubs won the World Series), spending five days one-on-one with my Dad in Missouri and more time with Ann and the kids in the past year than perhaps in the last five. The best part of my therapy is my grandson, Cole. At 20 months, he doesn’t know I have ALS. He just wants “Papa” to come over to play. As the video shows, he gets a bit excited when I show up.
In closing, I have no illusion that the road ahead isn’t a challenging one, but I gain strength from trying to make a small difference in a tough disease and from your prayers and support. I often get asked “what can I do.” All we ask is that you continue to keep us in your thoughts and prayers. As we head into the Thanksgiving holidays, I just wanted to wish you and your family all the best. We all have so much to be thankful for.
Stay Strong,
October 14, 2016
Based on some of the developments over the past couple weeks, I thought I would provide a brief update. First and more importantly, my health: I am staying strong. I’m getting no indications that the progression curve has changed — it is still slow. I am still very active and can do basically everything I want to except jog and play tennis. Through your support and prayers, I also remain strong mentally. Life is good.
I also remain focused on trying to make a difference in the world of ALS through two primary efforts – Answer ALS and XPRIZE. Answer ALS continues to move forward with good engagement and support from IBM. In support of those working so hard to find a cure, I remain convinced this project will provide the answers to understand the pathways involved with sporadic ALS (90% of the patient population). It will take time to load all of the data and discover the subgroups, but the team is committed to do it once and do it right.
The other effort has been focused on XPRIZE, which is an interesting organization. In essence, they are looking to support projects that will have a significant impact on the world where current market forces are not addressing the challenge. In partnership with Caterpillar, we have been working with XPRIZE around the concept of launching a prize around assistive devices to support those with ALS. The sad reality is that as ALS patients lose mobility, manipulation, speech or breathing, the technology they turn to are out of date and expensive. Our project is focused on closing this gap and providing support for people who so bravely fight this disease. Click here to read the announcement that indicates, out of the nine teams that competed at the recent XPRIZE Visioneering Summit, our project on ALS was one of the three projects that fell into the XZone, and we will now work with XPRIZE on a plan to launch the project. This is only made possible by the support provided by so many of you from around the world.
If you would like to learn more about the project, you can click here to watch the video of my closing remarks from the event or click here to read the news release on the XPRIZE website.
In closing, I am coming up on the one year anniversary of the ALS diagnosis (November 5). I will be at Johns Hopkins on November 7, for a complete checkup. I will be sure to send out an update after my visit to Hopkins – keep the good thoughts coming.
Stay Strong,
September 19, 2016
In my previous update, I mentioned that I threw out the first pitch at Wrigley Field during the Cub vs. Cardinal game. As if that wasn’t exciting enough, I also had the opportunity to be interviewed during the KMOX broadcast with announcer John Rooney where I discuss my ALS journey. You can hear the audio from the broadcast by clicking here.
I also want to thank my friends from Caterpillar who walked in my honor under the name Team Rapp for The ALS Association’s Walk to Defeat ALS® – Peoria Walk 2016. . Unfortunately, I wasn’t able to come back to Peoria for the walk, but trust me, I was there in spirt, and several of my family members attended as well to show their support. I can’t begin to tell you how touched I was to have my friends at Caterpillar walk in my honor. The money raised will have a huge impact for the entire ALS local community.My entire family and I truly appreciates the ongoing prayers and support from so many wonderful people. To learn more about this record-breaking event, click here.
Stay Strong,
September 6, 2016
Prior to my retirement from Caterpillar, I made a promise — a promise to practice what I preached to so many over my 35+ year career at Caterpillar — to “leave the place better than I found it and in more capable hands,” and to “put things down in writing.” In an effort to hold true to my words, I took the time to “put it in writing” by capturing 50 of my greatest lessons learned. Most of my lessons learned were from great leaders that have gone before me and, unfortunately, a few were based on mistakes or tough lessons learned. I wanted to pass on a few of those experiences in hopes that others will learn from them. Click here to learn more.
Stay Strong,
August 22, 2016
Since my last update, there’s been a lot of excitement – I had the privilege to throw out the first pitch at a Cubs vs. Cardinals game, and Caterpillar announced its co-sponsorship with Stay Strong on the possible development of an XPRIZE to support the development of assistive devices to make a difference in the ALS world.
As I mentioned in my last update, one of my departing gifts from the Caterpillar Board of Directors was to throw out the first pitch at the St. Louis Cardinals vs. Chicago Cubs baseball game at Wrigley Field. I can’t begin to tell you what an incredible experience this was! As most of you know, I’m a die-hard Cardinal fan, so I opted to wear a Cat shirt since I was in Cubbie territory – besides they wouldn’t allow me to wear a Cardinals jersey (or the color red). I have to admit, I was a little nervous, especially since I didn’t get to do a practice or warm-up pitch prior to the game, but from what my family and friends told me – I didn’t do half bad. You can judge for yourself by clicking here to view the video. Of course, my family and many Caterpillar colleagues were right there by my side, so it was even more enjoyable to share this experience with them. It was an evening I will never forget.
From an ALS perspective, things are going well. I had a very positive report from my doctor. He said that since my ALS started slowly, it is likely that it will progress slowly. He said that other than having ALS, I’m completely healthy – that’s news I will gladly take.
In partnership with Caterpillar, we are also working with XPRIZE. XPRIZE is a world-renowned non-profit organization that uses competition to incentivize research around some of the world’s greatest challenges. Calling themselves an “innovation engine,” XPRIZE says “tapping into that indomitable spirit of competition brings about breakthroughs and solutions that once seemed unimaginable. Impossible.” Caterpillar and Stay Strong are sponsoring what XPRIZE calls a “Visioneering Team,” bringing together thought leaders who are designing a competition to incentivize research toward a particular challenge. Click here to read the press release. Click here to watch a video on how the Visioneering Team ‘Cat’s Iron Will’ is helping to make progress toward a cure.
I also want to thank my friends at Caterpillar who are walking to defeat ALS under the name Team Rapp in support of me. Unfortunately, I won’t be able to attend the walk on September 10, but was able to sit down with several members of Team Rapp when I was in Peoria last week at an event they held. I continue to be extremely touched by everyone’s generosity and support.
Stay Strong,
July 18, 2016
Last week, I spent a full day at Johns Hopkins with my neurologists, the clinical team, Answer ALS and a trial in which I am participating, which is focused on being able to see the disease. While it was a busy day, in a nutshell, my neurologists said my strength is good, my breathing capacity is above normal and progression remains slow. My main challenge remains with stiffness in the legs and balance, but these are challenges I can manage. He said typically when progression starts slow, it stays slow. At this point, we have decided to not enter into any drug related trials. There are a couple in early stages that we are tracking, but with the slow progression, we have time to evaluate how they progress. I was really pleased with the overall visit – your prayers are working – thank you!
I’ve also been keeping busy in the broader world of ALS. I’ve remained active with Answer ALS, including being one of the enrolled patients, as well as working with IBM. The last meeting at IBM was June 28, where three work streams were identified:
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- Infrastructure: Includes cloud capabilities for hosting, sharing and working with Answer ALS data.
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- Analytics: Integrates clinical and biological datasets.
- Speech Analytics: Looks at potential applications of the speech analytics IBM has developed into Answer ALS to monitor disease progression.
All in all, the support from IBM has been great.
I’ve also remained active in the work-life balance space and have given presentations at OSF St. Francis Medical Center in Peoria, Illinois and spent an evening at our church in Peoria, St. Jude, talking about faith and adversity. It’s important for me to continue speaking on what I’ve been passionate about, because I would like my onward journey to be about more than just ALS. Click here to view my talk at St. Jude.
Of course, I am also taking some time to have fun along the way. In late May, I went to Scotland with our son Jay, my brother Don and cousin Joe. We played nine courses in nine days and finished at Royal Troon where this year’s Open Championship is being played. As I said to Jay on the putting green at Troon, “I’m not tired of the golf or the company.” It was a great trip. Over the fourth of July I was at a lake in the Blue Ridge Mountains and shared an ice cream with my grandson Cole. Click here to see the video. He remains a key part of my therapy :).
One of my next stops will be Wrigley field. One of my departing gifts from the Caterpillar Board of Directors was to throw out the first pitch at the St. Louis Cardinals vs. Chicago Cubs baseball game on August 11. Since they won’t allow me to wear my Cardinals jersey, I’m wearing a Cat shirt – it’s a team I’ve always enjoyed being a part of.
Thank you again for your continued support and prayers. I truly appreciate it
Stay Strong,
May 11, 2016
Things have been busy since my last update, and since my farewell at Cat. I’ve been working on three key initiatives to raise awareness and support those in search of a cure for ALS.
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One Definition of Winning: During my days at Cat, I was always pushing for one definition of winning. Long term in the world of ALS, there is only one definition of winning: finding a cure. However, near term there is a critical step that must be taken to enable a cure to be found, especially for patients suffering from sporadic ALS. Out of 100 patients, only 10 percent suffer from the genetic form; the other 90 percent suffer from the sporadic form of the disease. The developing hypothesis is that with sporadic ALS there is not one form of the disease, but multiple subgroups. From my perspective, until we can prove this hypothesis out, any drug trials related to sporadic ALS are a shot in the dark. The attached white paper is probably more detail than you want, but I have “put it in writing.” Working to identify the subgroups is where I am concentrating my time and investment (including the generous support from all of you), and Answer ALS is the initiative that I am fully supporting, including being one of the 1,000 people in the trial.
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Partnering with IBM: Former Caterpillar Chairman & CEO Jim Owens really helped open the door for me to partner with IBM. Building a database with deep genetic and clinical data through Answer ALS is only one step in the process. Once the data is created, it has to be analyzed to find the subgroups. Answer ALS is building a massive database on the 1,000 patients – perhaps the most aggressive and far-reaching analysis of 1,000 patients in history. While there is a high level of confidence that the answer lies in the data, there is concern on how to look across the various forms of data being collected on the 1,000 patients. We had an initial positive call with IBM a few weeks back and spent a full day with the IBM Watson team on April 27. It was an extremely positive and engaging discussion between neurologists and world-class data scientists. I have to admit I had a headache by the end of the day. The two sides agreed to work together to see what is possible. This is a critical step forward.
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XPrize: In addition to partnering with IBM, I am also collaborating with Caterpillar on the potential of putting out an XPrize challenge focused on ALS. There are certain grand challenges and social impact domains that have stalled as a result of either limited commercial motives or incentives driving the R&D in the field or the lack of effort, ability and/or effectiveness for government or social programs to tackle. In scenarios such as these, the notion is that perhaps the “crowd” could be summoned to collectively solve a grand challenge. Similarly, the notion is that, by identifying the right incentives, the “genius” in the crowd would find a way to surface, thus solving a market failure that otherwise may go unsolved indefinitely. XPrize is nonprofit and focuses on using gamification of social impact, crowd-sourced innovation and incentive competitions to harness collective genius from the global population of inventors, innovators, citizen scientists and the like to solve grand challenges, particularly when other methods fail. We are assessing if this methodology could be applied to the ALS challenge. The process we are engaged in will run through the end of September, then we will be able to assess if this process can be applied to ALS. We are working hard to increase the “shots on goal” in addressing the ALS challenge.
In closing, in addition to the efforts focused on ALS, I am close to finalizing a “Lessons Learned” document based on lessons learned throughout my Caterpillar career. I felt compelled to put them down in writing, so stay tuned to hear more on that.
Health-wise, my greatest challenge has been acclimating to the only ALS drug, Riluzole, and I am struggling a bit with my balance when I walk, but all in all I am doing fine.
I apologize if this is more information than you want. I head to Scotland to play golf with my son, brother and cousin next week. It has been on my bucket list, and we have decided now is the time. My next appointment at Johns Hopkins is in mid-July.
Take care and Stay Strong!
April 25, 2016
We continue to get great support from the extended Caterpillar family. The latest example was the ALS walk in Raleigh on Saturday where “Cat” was well represented by BCP and Gregory Poole. We really do appreciate the ongoing support.
I head to IBM later this week for the first face-to-face meeting between Answer ALS and the Watson team at IBM. We keep pushing.
Regards,
April 8, 2016
Although I am managing my transition out of Caterpillar, I just don’t consider it retirement. I like to think of it as reallocation – reallocation to focus my efforts on the challenges ahead and spending more time with my family and friends. I’m also not worried about staying busy and the past couple weeks are perhaps a good preview into the future. I had a positive visit to Johns Hopkins and participated in a productive ALS Finding a Cure board meeting.
My Johns Hopkins visit included clinical observations, nerve conduction and EMG tests. In the simplest of terms, my neurologists summarized the results of the visit as, “I remain convinced, it’s an early ALS diagnosis, and to date it appears the progression is slow.” Both of these are really good news. Your support and prayers are working – thank you!
After leaving Johns Hopkins, I went on to attend the ALS Finding a Cure (ALS FAC) board meeting as an invited guest. As I have researched organizations working in the ALS space, I have really been impressed with ALS FAC. There is considerable synergies between this organization and the Answer ALS trial in which I’m involved. I was actually on the agenda to discuss the possibility of working with Singularity University and XPRIZE to see if there are opportunities to apply an XPRIZE approach to the ALS challenge. The board was very receptive to the possibilities, so we will take it to the next level.
I will also be taking key members of the Answer ALS team to IBM in late April to meet with the Watson team. Answer ALS will generate massive amounts of data, and we are working to see how we can leverage existing industry capabilities to help us unlock the code on sporadic ALS. The hypothesis is, there are multiple sub-groups of sporadic ALS, and Answer ALS will provide the data platform to allow data analytics to determine if this is in fact the case.
It’s interesting to see how things come full circle – I was working with Singularity University and IBM in my job at Caterpillar, and it became very clear to me that the capability that exists to solve business problems can also play a role in solving the ALS challenge.
I’ll update you from time to time. Take care – Stay Strong!
Regards,
March 23, 2016
My plan is not to be a daily blogger, but to provide updates from time to time to let you know how things are progressing. First, thank you to everyone who has continued to support me and my family as we transition to the next stage and next challenge in life. I have to admit, we have been overwhelmed.
My transition from Caterpillar
I feel really good about where things stand. My replacement, Denise Johnson has quickly transitioned into the new role, and we spent quality time together to ensure a smooth shift in responsibilities. This past week was an emotional one for me and my family, as I did the “last lecture” for Caterpillar employees and friends on striking the balance. Caterpillar also held a great retirement reception for us. As my family and I discussed it on Friday evening, the consensus was we couldn’t imagine a more special week. No, things didn’t play out at Cat the way I was planning, but through the kindness and support of dealers, suppliers, customers, employees and community members, they really did make us feel special as we head into the next phase in life.
My treatment
As I mentioned in my last update, I am now enrolled in two trials. Neither are related to drugs as my neurologists still wants a feel for the speed of the disease progression before entering drug trials. I am enrolled in Answer ALS, which is creating the genetic mapping of 1,000 ALS patients. It takes this data, along with our clinical data and loads it onto one platform. I’m also enrolled in Track ALS, which is attempting to develop a new technology to do imaging of the brain to be able to see and monitor change of inflammation in the brain. One of the challenges with ALS is that doctors can’t see it — there’s no blood test, no MRI or x-ray that says you have the disease. It’s detected through clinical analysis and observations, and is often times discovered after everything else has been eliminated. The trial is attempting to develop new tools to improve the ability of doctor’s to diagnosis the disease.
Getting more involved in the broader ALS community
For me, the fog is beginning to lift, and it ties to the Answer ALS trial I’m enrolled in that I mentioned above. The developing hypothesis in the world of ALS is that in the sporadic type of ALS (sporadic makes up 90% of ALS patients), there is no one form of ALS — there are multiple sub-groups of ALS. I’ve drafted a white paper outlining this hypothesis that is in routing to industry experts. I continue to push for “putting it in writing.” The challenge historically has been that this has been difficult to impossible to determine, but with the advent of super computing and cloud storage, we can now store and analyze massive amounts of data for a fraction of the historical cost. For example, in the year 2000, it would have cost somewhere in the range of $95M to do my genetic map. Today, in the Answer ALS program, it costs just over $2,000. This allows, for the first time, the creation of one platform with huge amounts of data than can then be opened up to the world of data analytics to determine if sub groups exist. We had a fascinating call between Johns Hopkins and IBM this past week to discuss the project, and both parties were extremely excited about the possibilities. I really do sense that Stay Strong vs. ALS will focus on proving out this hypothesis. In business, we always talked about the power of focus, and I am convinced that focusing in this space offers the greatest opportunity to have an impact. I’ll keep you posted as we proceed.
I have my next appointment at Johns Hopkins between March 31 and April 4, and I’ll give you an update following the visit to let you know how things are going. That’s all for now — Stay Strong.”
Regards,
February 22, 2016
Thank you to everyone who has reached out and offered support. It has been overwhelming, but very much appreciated. Things have been busy managing the transition at Caterpillar, while also getting treatment and working to determine what role I can play in the ALS community.
On the transition, I’ve always said a leader at Cat needs to leave the business in more capable hands, and that is exactly what I have done with Denise Johnson. We have worked very closely together to ensure a smooth transition. She will do great.
On treatment, I am getting great support from Johns Hopkins. I could not be more pleased with the quality of care but also the quality of people that will help me and my family on our journey. I’ve enrolled in two trials — Answer ALS and Track ALS. They are not trials involving new drugs. They are focused on gaining a better understanding of the disease. I’ll update you more on the details as these trials progress.
Lastly, on how I will engage in the ALS community the fog is starting to lift. It is a complex world, but I am starting to narrow my focus. I’ll provide more details in the months to come, as I am starting to sense there is a role for me to play.
Stay Strong!
Regards,
April 27, 2017
With the support of family, friends, more than 150 Caterpillar employees from Building Construction Products and the Gregory Poole Equipment Company, a great group of people came together to participate in the Triangle Walk to Defeat ALS in Raleigh, NC. As a team, we hit our goal of raising $40K to support the local ALS Association and the good work they do. It was the second time I walked in this event and plan on doing it for years to come – God willing.
Stay Strong,
April 5, 2017
Last week, I had the distinct pleasure to be recognized for my work with Junior Achievement (JA), along with Debbie Simon, President and CEO at UnityPoint Health Methodist | Proctor; and Chuck Weaver, entrepreneur as Laureates in the Business Hall of Fame. JA is about empowering young people to own their economic success. Their volunteer-based K-12 programs foster work-readiness, entrepreneurship and financial literacy skills, and use experiential learning to inspire kids to dream big and reach their potential. I’ve been involved with JA for more than 10 years, and throughout my involvement, I truly believe that I gained a lot more in return than I ever gave. It was a humbling experience and as the video shows it was a great stroll down memory lane.
You can also learn more about Junior Achievement here.
Stay Strong,
March 7, 2017
It’s been a while since my last update, and with the conclusion of my recent visit at Johns Hopkins, I thought I would summarize where things stand.
Most importantly, I am staying strong, still on my feet and moving forward. Our house in Cary, NC, is nearing completion. In January, I walked my daughter, Ali, down the aisle and danced the father/daughter dance. We got Stef moved to NY, and Jay and Katy are expecting a second son in June – one more reason to keep fighting. The support and prayers from around the world are so much appreciated.
The results of the series of tests at Hopkins continue to point in the same direction – slow progression, which is great news. While most say there is nothing you can do to fight the disease, I continue to execute a disciplined protocol based on six key components:
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- I’m getting my traditional care through Johns Hopkins
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- I’m working with an integrated medicine doctor, who has picked up on a high level of toxicity in my body, and I am working through a process to bring it down
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- I continue to stick to the Wahls Protocol for my diet
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- I am working with a foundation training specialist to build strength and balance
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- I’m employing acupuncture in an attempt to keep the pathways open
- And most importantly, I continue to believe this is a battle I can win, supported by prayers and affirmations
In addition to fighting the disease, I remain focused on trying to make a difference in the broader context vs. ALS, concentrating on two key initiatives. The first is Answer ALS, which I truly do believe holds the key to understanding the causes of the disease. I participated in a session earlier this week, and we continue to make progress towards the target of loading an incredible amount of data concerning 1,000 patients (more than 400 have already been enrolled) and then putting it on a platform open to anyone in the world wanting to access it to help us unravel the mystery that those who have gone before us have not been able to solve. The engagement with IBM continues to build momentum as part of the project.
And while Answer ALS is focused on the long-term cure, people currently suffering from the disease are in desperate need of better assistive technologies to improve their quality of life. It’s a harsh disease. It leaves the mind, but takes everything else. Through an association with XPRIZE, we are attempting to ignite efforts to bring key assistive technologies (mobility, manipulation, communication and respiration) to market to dramatically improve patient and caregiver independence and quality of life. Through the support of family, friends and the Caterpillar community, we have raised the funds to cover operating costs to launch the campaign, and we are now in the process of fundraising for the prize itself.
Through both Answer ALS and XPRIZE, I do sense we are playing a small, but effective role in moving the ball forward. Between the funds we have dedicated as a family and those provided by Caterpillar and so many of you, we have made investments or commitments totaling more than $5.8 million. I keep a log of the “gifts of ALS,” and your support of Stay Strong is one I appreciate so much.
In closing, my grandson, Cole, is my new golf partner. Click here to see him in action on the driving range or here to see another one of his amazing golf highlights. He continues to demonstrate each and every day that anything is possible. Note the Caterpillar sweatshirt and Cardinals hat 🙂
Stay Strong,
December 24, 2016
On the eve of the birth of our Lord Jesus Christ, I felt compelled to send you a brief note of thanks. When you have a disease where there is no known cause or cure, and yet you still consider 2016 to be a great year, I can only attribute it to the power of your thoughts and prayers. So, thank you so much for all the support you’ve sent my way. I wish you all the best for the holiday season! Enjoy time with family and friends, and always remember the true meaning of Christmas. As you plan for 2017, I’ll ask that you give me the same gift you have blessed me with this year — just keep me and my family in your thoughts and prayers. Lastly, my grandson Cole also continues to demonstrate that anything is possible 🙂 Click here to see him reach new heights.
Merry Christmas,
November 8, 2016
Anniversaries have always been something to celebrate, ranging from birthdays to marriage. They are also events that, in many cases, lead to reflection. Having just come past the one-year anniversary of my ALS diagnosis, I thought I would pass along a more detailed update to let you know where things stand. It is amazing how fast the time has gone.
A key priority for me post diagnosis was a proper transition out of Caterpillar. I feel good about how this has been managed. Denise Johnson is off and running as my replacement, and I’m very proud of Jim Umpleby. I’m confident he will do a great job as CEO. I’m also glad that Dave Calhoun will play a larger role at Caterpillar as Chairman. While I remain engaged and support my Cat colleagues when required, I also know the company is in good hands. My last official act was publishing “Measure Twice, Cut Once,” a book of my lessons learned over my years at Caterpillar, as I simply felt I owed it to the organization.
On my treatment, I continue with a dual-path plan. I’m getting my traditional care at Johns Hopkins and could not be more pleased with Dr. Jeff Rothstein and his team. I am also working with Dr. Ken Sharlin on a functional medicine approach that includes diet and exercise. The combination at this point appears to be working. I just finished my one-year, post diagnosis visit at Johns Hopkins, and my breathing capacity and strength are good. I still have issues with leg stiffness and balance. The most concerning development as of late has been a couple of falls over the last 30 days. I am just going to have to be more cautious. All in all, I am doing fine physically, and all indications continue to point to a slow progression, which is such a blessing. While at this point I am not participating in any drug trials, I am participating in trials to try and better understand and “see” the disease.
We have established staystrongvsals.com and developed clarity around the role we want to play in the world of ALS. One is focused on the long-term cure (Answer ALS), and the other is focused on helping patients who fight this challenging disease (XPRIZE focused on assistive devices). We truly feel these are the right two efforts to dedicate our time, energy and money including the support provided by so many of you.
In addition to treatment and participating in the ALS efforts, I am keeping busy. I enjoy remaining on the board of Abbvie and FM Global. I’m involved with my son Jay on property development in the Raleigh area. We are building a house in Cary, North Carolina and should be in the new home by the end of March. I’m also spending a great deal of quality time with family and friends. A few of the highlights for the past year were a golf trip to Scotland, throwing out the first pitch at Wrigley (especially since the Cubs won the World Series), spending five days one-on-one with my Dad in Missouri and more time with Ann and the kids in the past year than perhaps in the last five. The best part of my therapy is my grandson, Cole. At 20 months, he doesn’t know I have ALS. He just wants “Papa” to come over to play. As the video shows, he gets a bit excited when I show up.
In closing, I have no illusion that the road ahead isn’t a challenging one, but I gain strength from trying to make a small difference in a tough disease and from your prayers and support. I often get asked “what can I do.” All we ask is that you continue to keep us in your thoughts and prayers. As we head into the Thanksgiving holidays, I just wanted to wish you and your family all the best. We all have so much to be thankful for.
Stay Strong,
October 14, 2016
Based on some of the developments over the past couple weeks, I thought I would provide a brief update. First and more importantly, my health: I am staying strong. I’m getting no indications that the progression curve has changed — it is still slow. I am still very active and can do basically everything I want to except jog and play tennis. Through your support and prayers, I also remain strong mentally. Life is good.
I also remain focused on trying to make a difference in the world of ALS through two primary efforts – Answer ALS and XPRIZE. Answer ALS continues to move forward with good engagement and support from IBM. In support of those working so hard to find a cure, I remain convinced this project will provide the answers to understand the pathways involved with sporadic ALS (90% of the patient population). It will take time to load all of the data and discover the subgroups, but the team is committed to do it once and do it right.
The other effort has been focused on XPRIZE, which is an interesting organization. In essence, they are looking to support projects that will have a significant impact on the world where current market forces are not addressing the challenge. In partnership with Caterpillar, we have been working with XPRIZE around the concept of launching a prize around assistive devices to support those with ALS. The sad reality is that as ALS patients lose mobility, manipulation, speech or breathing, the technology they turn to are out of date and expensive. Our project is focused on closing this gap and providing support for people who so bravely fight this disease. Click here to read the announcement that indicates, out of the nine teams that competed at the recent XPRIZE Visioneering Summit, our project on ALS was one of the three projects that fell into the XZone, and we will now work with XPRIZE on a plan to launch the project. This is only made possible by the support provided by so many of you from around the world.
If you would like to learn more about the project, you can click here to watch the video of my closing remarks from the event or click here to read the news release on the XPRIZE website.
In closing, I am coming up on the one year anniversary of the ALS diagnosis (November 5). I will be at Johns Hopkins on November 7, for a complete checkup. I will be sure to send out an update after my visit to Hopkins – keep the good thoughts coming.
Stay Strong,
September 19, 2016
In my previous update, I mentioned that I threw out the first pitch at Wrigley Field during the Cub vs. Cardinal game. As if that wasn’t exciting enough, I also had the opportunity to be interviewed during the KMOX broadcast with announcer John Rooney where I discuss my ALS journey. You can hear the audio from the broadcast by clicking here.
I also want to thank my friends from Caterpillar who walked in my honor under the name Team Rapp for The ALS Association’s Walk to Defeat ALS® – Peoria Walk 2016. . Unfortunately, I wasn’t able to come back to Peoria for the walk, but trust me, I was there in spirt, and several of my family members attended as well to show their support. I can’t begin to tell you how touched I was to have my friends at Caterpillar walk in my honor. The money raised will have a huge impact for the entire ALS local community.My entire family and I truly appreciates the ongoing prayers and support from so many wonderful people. To learn more about this record-breaking event, click here.
Stay Strong,
September 6, 2016
Prior to my retirement from Caterpillar, I made a promise — a promise to practice what I preached to so many over my 35+ year career at Caterpillar — to “leave the place better than I found it and in more capable hands,” and to “put things down in writing.” In an effort to hold true to my words, I took the time to “put it in writing” by capturing 50 of my greatest lessons learned. Most of my lessons learned were from great leaders that have gone before me and, unfortunately, a few were based on mistakes or tough lessons learned. I wanted to pass on a few of those experiences in hopes that others will learn from them. Click here to learn more.
Stay Strong,
August 22, 2016
Since my last update, there’s been a lot of excitement – I had the privilege to throw out the first pitch at a Cubs vs. Cardinals game, and Caterpillar announced its co-sponsorship with Stay Strong on the possible development of an XPRIZE to support the development of assistive devices to make a difference in the ALS world.
As I mentioned in my last update, one of my departing gifts from the Caterpillar Board of Directors was to throw out the first pitch at the St. Louis Cardinals vs. Chicago Cubs baseball game at Wrigley Field. I can’t begin to tell you what an incredible experience this was! As most of you know, I’m a die-hard Cardinal fan, so I opted to wear a Cat shirt since I was in Cubbie territory – besides they wouldn’t allow me to wear a Cardinals jersey (or the color red). I have to admit, I was a little nervous, especially since I didn’t get to do a practice or warm-up pitch prior to the game, but from what my family and friends told me – I didn’t do half bad. You can judge for yourself by clicking here to view the video. Of course, my family and many Caterpillar colleagues were right there by my side, so it was even more enjoyable to share this experience with them. It was an evening I will never forget.
From an ALS perspective, things are going well. I had a very positive report from my doctor. He said that since my ALS started slowly, it is likely that it will progress slowly. He said that other than having ALS, I’m completely healthy – that’s news I will gladly take.
In partnership with Caterpillar, we are also working with XPRIZE. XPRIZE is a world-renowned non-profit organization that uses competition to incentivize research around some of the world’s greatest challenges. Calling themselves an “innovation engine,” XPRIZE says “tapping into that indomitable spirit of competition brings about breakthroughs and solutions that once seemed unimaginable. Impossible.” Caterpillar and Stay Strong are sponsoring what XPRIZE calls a “Visioneering Team,” bringing together thought leaders who are designing a competition to incentivize research toward a particular challenge. Click here to read the press release. Click here to watch a video on how the Visioneering Team ‘Cat’s Iron Will’ is helping to make progress toward a cure.
I also want to thank my friends at Caterpillar who are walking to defeat ALS under the name Team Rapp in support of me. Unfortunately, I won’t be able to attend the walk on September 10, but was able to sit down with several members of Team Rapp when I was in Peoria last week at an event they held. I continue to be extremely touched by everyone’s generosity and support.
Stay Strong,
July 18, 2016
Last week, I spent a full day at Johns Hopkins with my neurologists, the clinical team, Answer ALS and a trial in which I am participating, which is focused on being able to see the disease. While it was a busy day, in a nutshell, my neurologists said my strength is good, my breathing capacity is above normal and progression remains slow. My main challenge remains with stiffness in the legs and balance, but these are challenges I can manage. He said typically when progression starts slow, it stays slow. At this point, we have decided to not enter into any drug related trials. There are a couple in early stages that we are tracking, but with the slow progression, we have time to evaluate how they progress. I was really pleased with the overall visit – your prayers are working – thank you!
I’ve also been keeping busy in the broader world of ALS. I’ve remained active with Answer ALS, including being one of the enrolled patients, as well as working with IBM. The last meeting at IBM was June 28, where three work streams were identified:
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- Infrastructure: Includes cloud capabilities for hosting, sharing and working with Answer ALS data.
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- Analytics: Integrates clinical and biological datasets.
- Speech Analytics: Looks at potential applications of the speech analytics IBM has developed into Answer ALS to monitor disease progression.
All in all, the support from IBM has been great.
I’ve also remained active in the work-life balance space and have given presentations at OSF St. Francis Medical Center in Peoria, Illinois and spent an evening at our church in Peoria, St. Jude, talking about faith and adversity. It’s important for me to continue speaking on what I’ve been passionate about, because I would like my onward journey to be about more than just ALS. Click here to view my talk at St. Jude.
Of course, I am also taking some time to have fun along the way. In late May, I went to Scotland with our son Jay, my brother Don and cousin Joe. We played nine courses in nine days and finished at Royal Troon where this year’s Open Championship is being played. As I said to Jay on the putting green at Troon, “I’m not tired of the golf or the company.” It was a great trip. Over the fourth of July I was at a lake in the Blue Ridge Mountains and shared an ice cream with my grandson Cole. Click here to see the video. He remains a key part of my therapy :).
One of my next stops will be Wrigley field. One of my departing gifts from the Caterpillar Board of Directors was to throw out the first pitch at the St. Louis Cardinals vs. Chicago Cubs baseball game on August 11. Since they won’t allow me to wear my Cardinals jersey, I’m wearing a Cat shirt – it’s a team I’ve always enjoyed being a part of.
Thank you again for your continued support and prayers. I truly appreciate it
Stay Strong,
May 11, 2016
Things have been busy since my last update, and since my farewell at Cat. I’ve been working on three key initiatives to raise awareness and support those in search of a cure for ALS.
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One Definition of Winning: During my days at Cat, I was always pushing for one definition of winning. Long term in the world of ALS, there is only one definition of winning: finding a cure. However, near term there is a critical step that must be taken to enable a cure to be found, especially for patients suffering from sporadic ALS. Out of 100 patients, only 10 percent suffer from the genetic form; the other 90 percent suffer from the sporadic form of the disease. The developing hypothesis is that with sporadic ALS there is not one form of the disease, but multiple subgroups. From my perspective, until we can prove this hypothesis out, any drug trials related to sporadic ALS are a shot in the dark. The attached white paper is probably more detail than you want, but I have “put it in writing.” Working to identify the subgroups is where I am concentrating my time and investment (including the generous support from all of you), and Answer ALS is the initiative that I am fully supporting, including being one of the 1,000 people in the trial.
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Partnering with IBM: Former Caterpillar Chairman & CEO Jim Owens really helped open the door for me to partner with IBM. Building a database with deep genetic and clinical data through Answer ALS is only one step in the process. Once the data is created, it has to be analyzed to find the subgroups. Answer ALS is building a massive database on the 1,000 patients – perhaps the most aggressive and far-reaching analysis of 1,000 patients in history. While there is a high level of confidence that the answer lies in the data, there is concern on how to look across the various forms of data being collected on the 1,000 patients. We had an initial positive call with IBM a few weeks back and spent a full day with the IBM Watson team on April 27. It was an extremely positive and engaging discussion between neurologists and world-class data scientists. I have to admit I had a headache by the end of the day. The two sides agreed to work together to see what is possible. This is a critical step forward.
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XPrize: In addition to partnering with IBM, I am also collaborating with Caterpillar on the potential of putting out an XPrize challenge focused on ALS. There are certain grand challenges and social impact domains that have stalled as a result of either limited commercial motives or incentives driving the R&D in the field or the lack of effort, ability and/or effectiveness for government or social programs to tackle. In scenarios such as these, the notion is that perhaps the “crowd” could be summoned to collectively solve a grand challenge. Similarly, the notion is that, by identifying the right incentives, the “genius” in the crowd would find a way to surface, thus solving a market failure that otherwise may go unsolved indefinitely. XPrize is nonprofit and focuses on using gamification of social impact, crowd-sourced innovation and incentive competitions to harness collective genius from the global population of inventors, innovators, citizen scientists and the like to solve grand challenges, particularly when other methods fail. We are assessing if this methodology could be applied to the ALS challenge. The process we are engaged in will run through the end of September, then we will be able to assess if this process can be applied to ALS. We are working hard to increase the “shots on goal” in addressing the ALS challenge.
In closing, in addition to the efforts focused on ALS, I am close to finalizing a “Lessons Learned” document based on lessons learned throughout my Caterpillar career. I felt compelled to put them down in writing, so stay tuned to hear more on that.
Health-wise, my greatest challenge has been acclimating to the only ALS drug, Riluzole, and I am struggling a bit with my balance when I walk, but all in all I am doing fine.
I apologize if this is more information than you want. I head to Scotland to play golf with my son, brother and cousin next week. It has been on my bucket list, and we have decided now is the time. My next appointment at Johns Hopkins is in mid-July.
Take care and Stay Strong!
April 25, 2016
We continue to get great support from the extended Caterpillar family. The latest example was the ALS walk in Raleigh on Saturday where “Cat” was well represented by BCP and Gregory Poole. We really do appreciate the ongoing support.
I head to IBM later this week for the first face-to-face meeting between Answer ALS and the Watson team at IBM. We keep pushing.
Regards,
April 8, 2016
Although I am managing my transition out of Caterpillar, I just don’t consider it retirement. I like to think of it as reallocation – reallocation to focus my efforts on the challenges ahead and spending more time with my family and friends. I’m also not worried about staying busy and the past couple weeks are perhaps a good preview into the future. I had a positive visit to Johns Hopkins and participated in a productive ALS Finding a Cure board meeting.
My Johns Hopkins visit included clinical observations, nerve conduction and EMG tests. In the simplest of terms, my neurologists summarized the results of the visit as, “I remain convinced, it’s an early ALS diagnosis, and to date it appears the progression is slow.” Both of these are really good news. Your support and prayers are working – thank you!
After leaving Johns Hopkins, I went on to attend the ALS Finding a Cure (ALS FAC) board meeting as an invited guest. As I have researched organizations working in the ALS space, I have really been impressed with ALS FAC. There is considerable synergies between this organization and the Answer ALS trial in which I’m involved. I was actually on the agenda to discuss the possibility of working with Singularity University and XPRIZE to see if there are opportunities to apply an XPRIZE approach to the ALS challenge. The board was very receptive to the possibilities, so we will take it to the next level.
I will also be taking key members of the Answer ALS team to IBM in late April to meet with the Watson team. Answer ALS will generate massive amounts of data, and we are working to see how we can leverage existing industry capabilities to help us unlock the code on sporadic ALS. The hypothesis is, there are multiple sub-groups of sporadic ALS, and Answer ALS will provide the data platform to allow data analytics to determine if this is in fact the case.
It’s interesting to see how things come full circle – I was working with Singularity University and IBM in my job at Caterpillar, and it became very clear to me that the capability that exists to solve business problems can also play a role in solving the ALS challenge.
I’ll update you from time to time. Take care – Stay Strong!
Regards,
March 23, 2016
My plan is not to be a daily blogger, but to provide updates from time to time to let you know how things are progressing. First, thank you to everyone who has continued to support me and my family as we transition to the next stage and next challenge in life. I have to admit, we have been overwhelmed.
My transition from Caterpillar
I feel really good about where things stand. My replacement, Denise Johnson has quickly transitioned into the new role, and we spent quality time together to ensure a smooth shift in responsibilities. This past week was an emotional one for me and my family, as I did the “last lecture” for Caterpillar employees and friends on striking the balance. Caterpillar also held a great retirement reception for us. As my family and I discussed it on Friday evening, the consensus was we couldn’t imagine a more special week. No, things didn’t play out at Cat the way I was planning, but through the kindness and support of dealers, suppliers, customers, employees and community members, they really did make us feel special as we head into the next phase in life.
My treatment
As I mentioned in my last update, I am now enrolled in two trials. Neither are related to drugs as my neurologists still wants a feel for the speed of the disease progression before entering drug trials. I am enrolled in Answer ALS, which is creating the genetic mapping of 1,000 ALS patients. It takes this data, along with our clinical data and loads it onto one platform. I’m also enrolled in Track ALS, which is attempting to develop a new technology to do imaging of the brain to be able to see and monitor change of inflammation in the brain. One of the challenges with ALS is that doctors can’t see it — there’s no blood test, no MRI or x-ray that says you have the disease. It’s detected through clinical analysis and observations, and is often times discovered after everything else has been eliminated. The trial is attempting to develop new tools to improve the ability of doctor’s to diagnosis the disease.
Getting more involved in the broader ALS community
For me, the fog is beginning to lift, and it ties to the Answer ALS trial I’m enrolled in that I mentioned above. The developing hypothesis in the world of ALS is that in the sporadic type of ALS (sporadic makes up 90% of ALS patients), there is no one form of ALS — there are multiple sub-groups of ALS. I’ve drafted a white paper outlining this hypothesis that is in routing to industry experts. I continue to push for “putting it in writing.” The challenge historically has been that this has been difficult to impossible to determine, but with the advent of super computing and cloud storage, we can now store and analyze massive amounts of data for a fraction of the historical cost. For example, in the year 2000, it would have cost somewhere in the range of $95M to do my genetic map. Today, in the Answer ALS program, it costs just over $2,000. This allows, for the first time, the creation of one platform with huge amounts of data than can then be opened up to the world of data analytics to determine if sub groups exist. We had a fascinating call between Johns Hopkins and IBM this past week to discuss the project, and both parties were extremely excited about the possibilities. I really do sense that Stay Strong vs. ALS will focus on proving out this hypothesis. In business, we always talked about the power of focus, and I am convinced that focusing in this space offers the greatest opportunity to have an impact. I’ll keep you posted as we proceed.
I have my next appointment at Johns Hopkins between March 31 and April 4, and I’ll give you an update following the visit to let you know how things are going. That’s all for now — Stay Strong.”
Regards,
February 22, 2016
Thank you to everyone who has reached out and offered support. It has been overwhelming, but very much appreciated. Things have been busy managing the transition at Caterpillar, while also getting treatment and working to determine what role I can play in the ALS community.
On the transition, I’ve always said a leader at Cat needs to leave the business in more capable hands, and that is exactly what I have done with Denise Johnson. We have worked very closely together to ensure a smooth transition. She will do great.
On treatment, I am getting great support from Johns Hopkins. I could not be more pleased with the quality of care but also the quality of people that will help me and my family on our journey. I’ve enrolled in two trials — Answer ALS and Track ALS. They are not trials involving new drugs. They are focused on gaining a better understanding of the disease. I’ll update you more on the details as these trials progress.
Lastly, on how I will engage in the ALS community the fog is starting to lift. It is a complex world, but I am starting to narrow my focus. I’ll provide more details in the months to come, as I am starting to sense there is a role for me to play.
Stay Strong!
Regards,
