Updates from 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.

Answer ALS Announces Grants Totaling $7 Million From Caterpillar Inc. and Stay Strong vs ALS (click to read more)

Take care, and stay strong.

Ed

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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

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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

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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

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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.

Click here to see

Stay Strong,

Ed

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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

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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.

Click here to view my presentation at the Muscular Dystrophy Association’s 12th Annual Night of Hope Gala championing ALS Research.

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:

• • I’m getting my traditional care through Johns Hopkins

• • 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

• • I continue to stick to the Wahls Protocol for my diet

• • I am working with a foundation training specialist to build strength and balance

• • 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:

1. 1. Infrastructure: Includes cloud capabilities for hosting, sharing and working with Answer ALS data.

1. 1. Analytics: Integrates clinical and biological datasets.

1. 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.

• 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. 

• 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.

• 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,