Moonshot to a Cure

Chapter 1

It was Wayne Dyer who said, “Abundance is not something we acquire. It is something we tune into.” I’m reminded of this quote every time I receive an email from the exponential wisdom of Peter Diamandis and his talented team. Last month I was honored to attend Diamandis’s inimitable two-and-a-half day summit in Beverly Hills, “Abundance 360”. It exceeded even my lofty expectations.

You may know Diamandis as creator and Chairman of the XPRIZE Foundation, the incentive competition that paid $10 million for the first private sub-orbital flight. That’s just one reason Peter is among America’s top entrepreneurs and an international pioneer in the fields of innovation, incentive competitions, and commercial space. In 2014, Fortune Magazine named him one of “The World’s 50 Greatest Leaders.”

There are many facets to the summit, from the plethora of exciting products that will be introduced in our future, to the scarcity we face if we do not adapt and grow, to the ability to impact our health and live thirty years longer (this is one of Peter’s “moonshots” — more on that later). Peter’s mantra is to have an optimistic and futuristic outlook on the abundance coming into our lives.

As I entered the ballroom to begin the summit, I realized how different this was going to be compared to other business seminars I’ve attended.

The people and the purpose set this summit apart. The attendees are not “lost” business owners. Peter describes his hand-selected attendees as “business owners ranging from $5M to $500M+ and are committed to turning their success into global significance.” He likes to frame this “global significance” as taking a moonshot approach. If you like learning from the top talent in the world, testing the products that will drive our economy for the next twenty-five years, and using health practices to turn yourself into bionic superhuman, then this is the place to be.

Peter did not disappoint as the conference led off with a fireside chat between himself, @Steve Jurvetson, and Tony Robbins. Jurvetson is a Tesla Board Member, and an acclaimed venture capitalist. Deloitte named him VC of the year in 2012. Robbins is of course the serial entrepreneur, best-selling author, philanthropist, and the nation’s #1 life and business strategist.

We soon learned that the world is on the precipice of disruption beyond recognition — we’re not just talking about self-driving cars, but automated airborne drones that will take you to and from work everyday. If you are in the parking lot business, your industry is about to be disrupted, and my advice is to think more abundantly.

Let’s get back to one of the central themes — moonshots. According to Diamandis, it simply means a “daring seemingly impossible mission. When most of the world is trying to go 10% bigger, a moonshot is 10x bigger.”

As Peter passionately described his moonshots (a term that comes out of Google X), I decided my moonshot was not going to be focused on my digital media company, but rather my health.

The past five years I’ve been dealing with a rare esophageal disease called Achalasia. It affects one out of 100,000 and skews towards an older population. The odds are a bit more “exponential” when you consider I’m forty-two years old. There is no known cure. I’ve had three major surgeries on it to date and I’m currently on a liquid diet for two meals a day. My doctors at the Mayo Clinic warn me that I am on a ten to fifteen year (at most) trajectory until I will have my esophagus removed, and thereby ingesting my meals through a feeding tube for the rest of my life. (I tell my wife that we should do that trip to France sooner rather than later).

No doubt, this diagnosis was a shock to the system. My doctors at Johns Hopkins, and now at The Mayo Clinic tell me how to medicate my disease (take certain acid reducing pills multiple times a day no matter the long term consequences and the fact that my “affordable health care” doesn’t cover the full extent of the prescriptions). The doctors cannot seem to identify the root cause of the disease or its cure.

Time is not on my side, but I’m also a happy patient who knows this isn’t the end of the world, just a new challenge. And after attending A360, Peter Diamandis’s abundant outlook to any problem gave me reason for hope…and action.

So I decided to disrupt my disease. My moonshot? I will be cured of Achalasia in five years. This isn’t just hope, or blind optimism. I have a plan, and I’m not going to let up. I will pursue and execute on my moonshot until I achieve it. It’s my massively transformative purpose (another Peter teaching).

It’s not every day you attend what I perceived to be a “business conference” and leave with a mission to cure a disease. I have that mission now. I see the abundance of “life happening for me, not to me” — a Tony Robbins teaching.

I’m looking forward to attending Abundance 360 next year, sharing my moonshot progress with Peter and designing new ones for the future.

This is the start of an amazing journey to disrupt the status quo and do the impossible, and I’m grateful for the visionary that planted the seed.

What’s your moonshot?

Chapter 2

Positive progress. I’m convinced that it is the most important element to life — it brings purpose, passion, mission, outcome-based thinking, and growth. It sustains and allows one to love, be grateful and selfless. Personally, if I’m not positively progressing in my marriage, parenting, business and health, then problems will only fester and I will regress.

This wasn’t always my way of thinking. For years I led a very different life — one of self-absorption, negative thinking and blaming. It led me to a pretty dark place in my personal and professional life. I really hit rock bottom when I started dreading the work in my business, emotionally disconnecting from my wife, and making any excuse to not spend time with my newborn baby.

To the outside world, my family and friends, they might be surprised by this revelation and to them I say, I was a good actor in those days. I’m also incredibly sorry for being a soulless and selfish man, instead of a kind, vulnerable and loving soul. Frankly, I didn’t know why I was this way, it was deep inside of my subconscious — and it needed to be explored and understood.

And at the ripe and young age of 40 I had an epiphany, one of those moments that hits you like a brick — when you say, “no more.” In that moment I committed to changing — everything. To understand, learn and grow.

Three years later, I’ll admit, I’m not perfect but I’ve positively progressed thousands of miles from the man I used to be. My marriage is 100x more loving, happier and fulfilling — never perfect, but positively progressing. My daughter is now the light of my life and our bond has never been stronger. She’s “my girl.” I’m “her boy.” I am committed to having a personal and positive moment with her every day — and we recently took our first Daddy/Daughter trip to Chicago and it was the most fun I’ve had in years. And it’s only going to get better.

In addition, I started a new business in 2015, Go BIG Media, Inc. that has grown 500% in two years, gone from three employees to 16, and from one office to four (DC, Seattle, Dallas and Seaside, FL).

As part of my transformation, I didn’t just create a media company, I created a culture company that kicks ass in the media space. Our culture is about service first — to our team, clients and community. In a little more than two years, we’ve won over 90 political races, increased the the bottom line of our corporate clients, won an award for “best company culture” in all of politics, donated $75k+ of company profits to local charities and our team has volunteered over 450 hours. That’s positive progress.

But through all of that massive progressive action, I kept neglecting one area of my life, my health.

As my initial “Moonshot” post described, in 2012 I was diagnosed with a very rare esophageal disease called Achalasia. What is Achalasia? Basically, the nerves in my esophagus are dead and thus the muscles don’t contract to push food into my stomach. Anything I eat lodges and the only way to get food down is to drink tons of liquid (and as you can imagine, soft foods are easier to eat than hard foods). There are a lot of problems that are created in such a scenario — and I’ll explain more about the disease in future posts.

The bottom line is that there is no cure. I’ve had three major surgeries and over 12 total procedures on my esophagus. It’s so problematic that I choose to eat 1–2 meals per day in liquid shake form. The doctors at the Mayo Clinic tell me I can only have one more surgery to improve my situation and after that, it gets “dicey.” Most likely, without a cure, I’m on a 10–15 year trajectory where they will remove my esophagus and I will be on a feeding tube the rest of my life.

And THIS is the one part of my life I neglected in my commitment to positively progress?!?!

Well, I don’t kick myself because I’m never going to be perfect. I’m full of flaws and sometimes paralyzed by problems I don’t want to face. The key is to identify it, resolve to change, and take massive action.

In late January 2017 I attended Peter Diamandis’s Abundance 360 conference and in that moment it hit me square in the head. I’m going to cure my disease in five years — a disease that has never been cured.

Why not, right?

Well in the last few months since my original moonshot post, I’ve made progress and I will share my story more consistently going forward. Stay tuned.

Chapter 3

In August 2016, I headed to the Mayo Clinic for a one year check-up on my latest esophageal surgery (to treat my Achalasia disease). This latest surgery, called a Heller Myotomy with Fundoplication (completed in 2015) was invasive — even today my stomach looks like I’ve been in a knife fight with five incision scars.

This was my third surgery to-date — the two previous surgeries (completed at Johns Hopkins in Baltimore) had failed and the doctors told me that no one has ever failed two surgeries before. I often wonder if I should have won an award for such a dubious honor.

But this third surgery in 2015 at Mayo had to be done because my non-working esophagus had actually curved like a banana. Food was not emptying into my stomach and, in addition to the discomfort, it was fermenting and eroding my esophagus. According to my doctors, they had to straighten it out or I was on a slippery slope to esophageal cancer. Thus, I elected to have my third major surgery in 26 months. The dread was palpable, but I had no choice. I just wanted to get it over with and thrive again.

During this third surgery, the surgeon actually cut my stomach and wrapped it around my esophagus so it would stay straight and stable. I ended up losing part of my stomach and for a skinny guy like me, it was an interesting outcome. To this day my appetite is about half of what it used to be and my wife jokes that she is willing to have this surgery one day as well.

I share all of this background to state that my 2016 one year check-up at the Mayo Clinic was an awakening moment for me.

At this check up, my doctor stated that things looked stable, but this “wrap” he had created will come undone one day. It could be 5–10 years, maybe more — it all depends on how I respond. But, I’m only allowed one more repeat surgery until it gets “dicey.” Meaning, without a cure, a feeding tube is on the horizon.

My doctors told me that all I could really do was eat soft foods and take anti-heartburn medicine (during this check-up, they also found an ulcer and a yeast infection in my esophagus, so the medicine was important to its healing).

I hate medicine. It’s necessary, I understand, but for every benefit, there’s a tradeoff. With anti-heartburn medicine, there are long-term links to dementia. When you kill all the bad “acid” in your body, you also kill off the good kind that feeds your brain.

It was in that moment, sitting in the Mayo Clinic offices, that I had an epiphany. I decided right then and there — I was done being a bystander to my disease. I just couldn’t accept that a cure was impossible and that all I could do was just wait around for a feeding tube (while taking medicine that might ultimately give me dementia).

What the fuck? No way.

I’ll also let you in on a secret — I love to eat good food and drink great wine with my wife and friends. I’m insanely curious. I’m also insanely driven to succeed. So, sitting around and accepting this fate just wasn’t going to happen.

I made a decision: I had to figure out this disease. I had to take control of it. I wasn’t going to let it take control of me anymore.

In that moment, I didn’t know what that actually meant, but I was ready to start. However, it would take months for my “moonshot” of finding a cure to this disease to fully develop.

First step? Clear up my ulcer and yeast infection (reactive work) and find out the root cause of why I suffer from this disease (proactive work). I negotiated to accept ingesting medications for now (a band-aid), but I also needed to find out what was causing all of my gut issues.

So I hired a functional doctor — out of pocket of course, because our healthcare system is about covering reactive outcomes rather than proactive ones — named Kyle Chavers. Dr. Chavers literally conducted over 40 different types of blood, urine, and poop tests on me (If you haven’t conducted a self-poop test before, you are one of the lucky ones).

A few weeks went by and the results were in — and they were astonishing, shedding a light on how my disease could have come about in the first place. And, some big changes were about to happen.

Chapter 4

“Phillip, the tests are back, we need to talk.”

This was the voicemail I received last November from Dr. Kyle Chavers, my new functional doctor. In the early fall of 2016, I underwent a torrent of tests with Dr. Chavers to determine what was going on in my body that may have caused my Achalasia.

Worldwide, the question of how people develop this disease has doctors vexed. There isn’t even a known genetic link. My doctors at Johns Hopkins and The Mayo Clinic threw up their hands and told me: “it is what it is.”

These doctors see hundreds of patients a week. The pressure is on to treat one patient and then move on to the next one. If you find yourself depending on them to do anything proactively, then you should probably adjust your expectations. I get it now and I’m not resentful about it — just smarter.

Once I understood this, I knew I had to do more work on my own. Interestingly enough, after hours and hours of research, I found a huge clue that rang right and true:

A recent study suggested Achalasia could be autoimmune related. That’s when I dove in head-first researching root causes to many autoimmune diseases. One common factor kept coming up — unhealthy gut issues due to diet.

But, I told Dr. Chavers our call would have to wait. It was November and Election Day was quickly approaching. I was crushed with TV appearances (where, of course, I predicted the wrong things) and client work (where our company proudly won 82 political races).

The week after the election, Dr. Chavers and I finally caught up to discuss the test results (over 40 different blood, urine, and fecal tests were taken in September and October). Believe it or not, the test results may have been more surprising and fascinating than those of the 2016 election.

I had a severe dairy allergy and overall, an unhealthy gut. Not only had I eaten some form of dairy pretty much every day of my life, but I also really ate anything I wanted, anytime I wanted. I always felt blessed with an extremely fast metabolism. But the results totally made sense, given that I was constantly bloated and lethargic. And in addition to dealing with Achalasia, I was diagnosed with eczema in early 2016. I wondered: could this be related to my gut issues too?

I thought about the research I had done, my Achalasia and eczema diagnoses, my test results and it hit me — this has to be autoimmune related. It is my diet that’s leading me down a dark road. At that point, I had a realization, but no plan.

Dr. Chavers suggested we immediately address a few issues to improve my situation. These included an immediate cease-and-desist of all dairy in my diet. That was a gut punch — pun intended — but I accepted it. He also put me on probiotics, prebiotics, and gut friendly nutrient supplements. I went from eating meat 2–3 meals per day, to just 4–5 meals per week. It felt drastic, but necessary.

Within two weeks of starting my new diet plan, I felt a dramatic improvement in my body.

It’s funny, I never realized how much some foods were afflicting me until I cut them out. (*It would take six more months until I fully realized how many unhealthy foods I continued to consume that appeared to be healthy. I will explain in-depth in future posts). After these dietary changes, my acid reflux improved to the point where I could afford to cut my daily acid-reflux medicine in half.

As 2016 came to a close, I felt like I had made a major improvement addressing my ulcer, gut issues, and the root cause of my disease. I was positively progressing, but I felt rudderless on an overall proactive strategy (other than improving my diet). I felt incomplete.

Little did I know that 2017 was about to change everything for me and I was unknowingly hopping on a rocket ship that was about to launch.

Chapter 5

“What’s your moonshot?”

The question posed by Peter Diamandis in late January 2017 piqued my interest in a way I wasn’t expecting. In my first post in this series, I describe in detail attending Diamandis’s Abundance 360 conference. Frankly, I was attending this conference to figure out how to take my business — not my health — to the next level.

As I spent my second to last day of the conference in the January warmth of Los Angeles, it was crystal clear in my mind that life doesn’t always move along a linear path. It has detours, contours, setbacks, breakthroughs and revelations. For five years I struggled with Achalasia. I ignored it, medicated it, became depressed over it, and had resigned to its inevitable conclusion: life with a severely restricted diet or even a feeding tube.

In August of 2016, I woke up and started addressing the disease’s painful effects: the ulcer and the infections. I also was determined to figure out its cause and how I could proactively protect my esophagus as much as possible. Five months later, I was on the right path to improving a lifetime of damage.

But now I was focused on setting my moonshot. I was determined to find a cure to my disease in five years. I had no idea what that meant at the time, but I knew I was going to get there…and it scared the shit out of me.

On the last day of the conference, Diamandis introduced a fascinating speaker to the stage, Dr. Neil Riordon. Riordan is founder of the Stem Cell Institute in Panama. I was mesmerized by his speech on stem cells. He presented strong evidence that stem cells can treat and cure many ailments and diseases including heart disease, rheumatoid arthritis, autism, and yes, autoimmune disease.

Riordan’s clinic is overseas because the U.S. government has too many rules and regulations prohibiting doctors from using many stem cells for experimental use (other than minor elective surgeries).

I believe this is both good and bad. Caution and safety to protect patient health — good. But when patients facing dire situations are out of options and have no other choices available to them, experimental treatments might be their only hope, and they should be able to access them.

While I wasn’t at that point yet, I understood why many American citizens travel overseas to be treated with experimental medicines or procedures. It’s about hope. We all need it.

Riordan’s speech piqued my interest — I had been reading about stem cell research as a potential cure to Achalasia. Unfortunately, all the research I could find was from the early 2000s and there weren’t any new findings or information. It’s almost as if it went into a black hole. But if doctors thought that stem cells could be a cure to this disease 10–15 years ago, then maybe the advancement of stem cells today could be the bridge to their research. Why not, right? *Since I’m not a doctor, my ignorance is bliss.

There are many nuances to stem cell treatments (trust me, I’ve spent a lot of time researching it). You can administer stem cells through an IV or have them injected directly into the affected areas. The range and scope of possible treatments is shockingly broad. For this blog, I’m keeping it simple as to not lull you to sleep.

After Riordan’s speech, I tracked him down (I wasn’t going to leave until I unloaded on him) and we discussed my condition. He said he knew of my disease but had never treated anyone with it. But he also believed that Achalasia falls in line with types of conditions that stem cells can cure.

Riordan gave me his card and told me reach out to him once I got home.

Moonshot in place — and now I had hope.

Chapter 6

I returned home in early February 2017 from the Abundance 360 conference and following my talk with Dr. Neil Riordan, I was cautiously optimistic.

After six years of living with Achalasia, I’d taken control of my condition and stopped thinking my doctors were just going to figure it out for me. A long road was ahead but for the first time I had hope and purpose.

I immediately conducted a conference call with the Stem Cell Institute and discussed the options they offered. One of my concerns was the risk stem cell injections could pose. The advisors made a point of explaining that there is no real health downside to undergoing stem cell treatments. I was told the downside is that the treatment may not work, but it won’t cause health problems for me. The real outcome was to get the stem cells into my damaged and surgically shredded esophagus with the hope that it would repair the nerves and muscle and work again (after six years).

The SCI was offering to use stem cells from a donor’s umbilical cord. Since no one had ever been treated for Achalasia at this clinic, they were recommending that I take the injections intravenously (they had no option to surgically inject stem cells into my esophagus).

A part of me thought, “What the hell do I have to lose? It’s safe and either it works or it doesn’t. It’s expensive but it’s also my life.” I’m also reminded of a Wayne Dyer quote that states, “Go for it now, the future is promised to no one.”

I began discussing the situation with my mentor and friend, Chad Cooper. He suggested I not rush into anything, gather as much information as possible, and consider talking to other doctors that understood stem cells. He suggested I meet with his friend, Bart Rademaker, a doctor out of Tampa, Florida that is also a surgeon at the Okyanos Cell Therapy Clinic.

Much like the Stem Cell Institute (in Panama), Okyanos Cell Therapy operates as an overseas (Bahamas) stem cell clinic, but with a different twist; they don’t use a donor’s umbilical chord stem cells to treat patients, they use your own fat, taken from the stomach (extracted via liposuction). The doctors at the OCT were American too, flown in from various states, to treat patients.

Dr. Rademaker is an amazing, caring physician — I was blown away by his attention, questions and focus on what was best for my health. He immediately assembled a medical team and we began conference calls to discuss my disease, thoughts on treatments, and what options were best for me.

The two stem cell clinics were both very credible but each treated patients differently. Common sense said that it would be more effective to have the stem cells surgically injected into my esophagus, rather than taken intravenously. I also liked the idea that my own stem cells would be used to treat my damaged esophagus, rather than a donor’s stem cells. This thought-process was made by my own intuition and nothing else.

Soon thereafter, Dr. Rademaker and his team identified an American gastroenterologist willing to discuss stem cell surgical options with me. Within a few days I was on the phone with this surgeon and his honesty was refreshing. He was willing to take steps forward with me, but he had no desire to rush into this without checking every box possible.

Things were moving fast and I’m not going to lie, it was exciting. But I also listened to the surgeon and Dr. Rademaker. It was important to take a deep breath and be cautious and patient. I wasn’t facing any imminent health situations, so why not evaluate my options and ensure my health and safety came first?

By the end of February, I made the decision to put the Stem Cell Institute option on hold and slowly go forward with Dr. Rademaker and the Okyanos Cell Therapy Clinic.

It’s also when the idea came to me to document my story by writing about it. My thought process was to “rattle the trees” to see if anyone out there would read it and provide additional insight or help. I knew I needed the exposure to open new doors, and I felt extremely blessed when Inc. published my moonshot story on March 1, 2017.

Within a week of the article coming out, I received a voicemail at my company from an Achalasia researcher and advocate. This kind and caring soul would soon become a lifeline for me that I never expected.

Chapter 7

“Hi, Phillip. This is Nancy Lazarus calling. I just read an article of yours. I am the founder of Achalasia Awareness. I would absolutely love to talk to you. I am a die hard Achalasia advocate and I would absolutely love to talk to you, okay.”

This was the voicemail I received on March 8, 2017. Since my Inc. article had been published I had over 50 messages from friends, family and strangers. All were positive, kind, loving and heartfelt (Still to this day, people are reaching out to me over the article and I’m blown away by the support. It motivates me to fight harder and I also greatly appreciate that people aren’t afraid to ask me about it. I guess writing a national article gives others permission to inquire about my health, and I love that).

When I originally wrote the Inc. article my outcome was to get exposure to my rare disease — to take control of Achalasia by seeking help. It was like throwing a fishing line in a big ocean and hoping to catch a very specific shark. Nothing was going to change unless I was willing to cast the line into the water. While I was grateful for the kind words and concern of family and friends, I wanted outsiders to read it, spread it, and hopefully someone somewhere would find it and reach out.

Still, after receiving the voicemail from Nancy, I was initially hesitant to call her back. A big human flaw of mine is being suspicious of other people’s motives — instead of seeing Nancy as a kind soul who was reaching out to help, I was apprehensive. I wanted help from strangers but was reluctant to accept the potential help of this stranger. What a contradiction. But I quickly forced myself to turn it around and identified that my instincts are sometimes terribly wrong.

So after a few days I reached out to Nancy, and we began talking. She had suffered from Achalasia for many years and created the Achalasia Awareness Organization to serve as a resource for those that suffer from the disease.

I’m so glad I reached out to Nancy too. She was kind, funny and caring — and I instantly liked her. We began our conversation by telling war stories of our many surgeries, the painful effects of the disease on every day life and our quest to cure and incurable disease. There was an instant bond.

The stem cell path I was pursuing was interesting to her — so much so, she offered to reach out to her best medical contacts — Achalasia specialists from The Cleveland Clinic, Stanford University and her esophageal doctors in Los Angeles. We hung up and planned to talk again the following week. I had no expectation after the call, but I did think, maybe this will help — maybe Nancy will be a lifeline for me.

The following week, Nancy and I reconnected and she had some interesting information. The specialists she spoke with, all recommended we talk to a doctor at Johns Hopkins who is considered foremost researcher in the country on Achalasia — Jay Pasricha (a doctor I never knew or heard of when I was a patient at Johns Hopkins from 2012–2014).

Nancy’s determination led her to speak with Dr. Pasricha within a few days. She explained my case and my pursuit for a cure with stem cell treatments overseas. Dr. Pasricha explained that he had worked on this issue for decades and was convinced a cure was possible within five years.

Nancy called me immediately and shared the news and a week later I was on the phone with Dr. Pasricha. My conversation was fascinating because for the first time, I felt like I was peeling an Achalasia onion, not just trying to take a massive bite out of it. I was now learning more about the disease, the good and bad of my own situation, and the outlook of the disease for the future.

It definitely wasn’t all roses for me either. While Dr. Pasricha believed a cure was in the future — and was encouraged that stem cells treatments could be the answer — he wasn’t so sure about my situation. My history wasn’t tenable — three major surgeries where doctors sliced the esophageal muscle up and down. My esophageal muscles looked like an upside down pom-pom– if I can be even more hyperbolic, the muscle was shredded and covered with scar tissue.

Pasricha’s concern was that I may be “too far gone” and that Achalasia patients who were free of any surgeries would be the best candidates for a cure. He believed clinical trials and tests for a cure were coming in the future. Yet, I may not be eligible due to the damage inside my esophagus from past surgeries.

I asked Dr. Pasricha to at least consider me as a patient. He agreed but suggested I push the pause button on any type of overseas stem cell treatments (that weren’t FDA approved) and come under his care as he worked through my case. I agreed.

Chapter 8

In April, I returned to the Mayo Clinic for a checkup and to see if my esophageal ulcer had healed — an ulcer I had painfully lived with for 12 months. Their endoscopy revealed the ulcer was gone (a huge relief), but also lots of scar tissue remained within the esophageal wall and the appendage had begun curving again.

The report was fairly good news except for the scar tissue issue and I was encouraged that the damage inside my esophagus was not progressing too quickly.

I sat down with my Mayo doctor and told him about my moonshot and how it had all started eight months earlier with our conversation about the prospect of a feeding tube in my future. I also told him I was now working with Dr. Jay Pasricha and I was due in Baltimore in two weeks to meet with him and get a different type of endoscopy performed.

My Mayo doctor did a double take when I mentioned Dr. Pasricha’s name — totally unrelated to my situation, he had met Dr. Pasricha a few weeks earlier at this very same Mayo Clinic. He praised Dr. Pasricha’s reputation in Achalasia research and was very interested in where this moonshot was going.

*An interesting side note: My Mayo doctor also made it clear that he believes The Mayo Clinic is the best hospital in the world when it comes to treating and healing sick patients. But if I was expecting them to be the leaders in exploring new innovative and cutting edge experiments and clinical trials, I was in the wrong hospital system. I appreciated his candor and to those reading this series, consider this before relying on The Mayo Clinic to find new patient experiments for cures. That’s simply not their mission.

Two weeks later, we loaded up the family and traveled to Johns Hopkins hospital for my 14th esophageal endoscopy since 2012 — but this one felt different for me, even if I suspected the results would be like all the others; I was now the patient of Dr. Jay Pasricha and we were exploring ways to find a cure.

Unsurprisingly, the results of the endoscopy confirmed what I already knew; I had a flaccid esophagus with no working nerves and muscle. My three previous surgeries had cut the muscle to shreds and scar tissue was prevalent throughout the lining of the esophageal wall.

Even though this confirmed every other endoscopy I had taken for five years, Dr. Pasricha was willing to assemble a team around me and consider, at some future point, pursuing a clinical trial using stem cells as a means to cure my Achalasia.

When I asked how many people he wanted in the trial, he said, “It will be a one man trial since it’s the first one ever.”

Ok then.

My first instinct is that this is really cool. My second thought was, slow down cowboy, how many first time experiments work?

Eventually, I concluded that moving down this road would ensure options and I didn’t need to make any final decisions for a while — so why not keep taking baby steps? Dr. Pasricha did ask if I would be willing to come back to Johns Hopkins in a few weeks and do a different type of endoscopy — my third one for the year and 15th overall. I reluctantly agreed.

In the meantime, he had assembled a team to conduct regular conference calls with me to discuss options. The final June endoscopy would reveal the plan forward for stem cell treatment.

My June visit to Hopkins ended like the previous 14 endoscopic procedures and I don’t think I need to revisit those results again. A few weeks later, Pasricha and his team reached out with an idea.

He was willing to try a one-man clinical trial where they would biopsy calf muscle stem cells from my leg, culture them in a lab (the Cook Myosite in Pittsburgh, PA) to produce hundreds of thousands of stem cells. After that, they would inject them into my esophagus to reconnect the muscle tissue, stimulate nerve function, and regain muscle contraction. To more easily translate this, the hope is that this will make my esophagus work again.

Since this has never been done before, Pasricha was clear that there are no odds of this possibly working, or not working. We’d be flying blind.

The next step for me was to get family approval to move forward. Pasricha was tasked with getting the Johns Hopkins Independent Review Board (IRB) to approve the clinical trial and to get The Cook Myosite team to approve taking my calf biopsy and culture.

Soon thereafter, I agreed to proceed and The Cook Myosite team agreed as well. All that was left was the IRB’s approval.

Chapter 9

I don’t know Dr. Steven Gundry. Never met him either. But the guy changed my life. Frankly, I believe he helped save my life.

It started with gut health. What I’ve learned about the digestive system in the last eight months has blown my mind. As I move towards my moonshot to find a cure to my Achalasia diagnosis, I have also been on a mission to improve my diet as well.

After undergoing a myriad of tests in the fall of 2016, the results came back that I was allergic to dairy and I had a very unhealthy gut. Ultimately, I believe an unhealthy gut caused my disease.

In addition to getting healthier, I was also determined to get off my anti-acid medications. The constant use of prescription drugs was not ideal and it felt like putting a band-aid on a massive wound. It might stop the bleeding, but the wound was never going to heal (or be healthy).

This 2nd outcome to my moonshot led me to a webinar in the spring with Peter Diamandis and Dr. Steven Gundry. Gundry had just published a book, The Plant Paradox, which focuses on how gut health has deteriorated for the vast majority of people due to diet. And this does not just include a diet of obvious bad foods, but also foods that all of us consider “healthy.”

Gundry’s webinar spoke to me like Diamandis’s moonshot challenge months before. As I blindly tried to figure out how to improve my diet and get off prescription medications, this felt like the roadmap. I immediately ordered the book and dove in.

Side Note: Whether you have weight issues, auto-immune disease, or you just want to improve your diet, read this book. It focuses on the dangerous protein in most of our foods called lectins — and how they attack the gut. These lectins are found in bad foods and ingredients — think: sugar, fats, dairy, soy, potatoes, corn, white flour, alcohol, etc. Surprisingly, they are also found in so-called “healthy foods” including wheat flours, grains and products, some nuts, nightshade vegetables, all beans (legumes), and most fruits.

My diet was lectin rich to say the least. Frankly, up until 2016, I was consuming every “no food” on the list…regularly. I’m not sure whether it was genetics, poor decisions, or a combo of both, but (I’ll emphasize again) I believe gut issues caused my autoimmune disease. If my goal was to get off my medications, it was time to change my diet, for good.

After reading The Plant Paradox, I set out to implement the “Gundry Diet” (which also included his recommended nutritional supplements). In June, I began a preliminary test phase and then committed to fully implementing the plan by mid-July (once I returned from a trip to China with Peter Diamandis).

The test phase was hit-and-miss as I adapted to eliminating lectin-rich staple foods I had eaten my whole life. For example, I love cashews. I had been eating them every day as a “healthy” substitute to potato chips. Guess what? They are terrible for you with tons of unhealthy lectins that attack the gut. Another one was wheat. I always ate wheat bread, grains, pastas, rice etc. I thought I was being healthy, but just the opposite was occurring.

Damn, this was a challenge!

Once I returned from China, I went all-in for five weeks — 100% Gundry Diet. At the five-week mark, I re-commissioned my functional doctor, Kyle Chavers to take all my blood, stool, and urine tests again and see where my body stood compared to the same tests conducted in 2016. Here is what we found:

TOP LINE RESULTS:

• Thyroglobulin (Thyroid) antibodies: Went from 51 to 42 (improvement)
• White blood cell count went down — from 5.1 to 3.4 (improvement)
• Testosterone came up 200 points 💪 🔥 💯
• Vitamin D doubled (was below normal in 2016)
• Triglycerides went down
• Bad inflammatory gut bacteria went from 7 species to 3 (and from 2 potential pathogens to 1)
• Fecal Secretory IgA (Leaky gut test): Went from 1685 to 1235

Holy hell! It worked! While my results were not perfect, this was staggeringly positive news. Almost everything was moving in the right direction.

The most exciting part of this test phase? I eliminated my prescribed medications for the entire five weeks without any esophageal pain or acid reflux. This was the first time I had been off anti-acid drugs in 5+ years.

The Gundry Diet is not easy and I know there will be setbacks. But I also know that I’m on the road to a much longer, healthier life. I must stay committed and consistent. This isn’t a fad diet, it’s forever.

That’s how Dr. Gundry saved my life.

Chapter 10

Two years ago, I took a life-changing moonshot.

Diagnosed in 2012 with Achalasia, a rare, incurable esophageal disease, I vowed to find a cure within five years.

What’s Achalasia?

The basic explanation is that my esophageal muscles and nerves are dead and will never work again. From the food I eat to the way I eat it, I have to think hard before I take each bite. Eating is a chore. Physically and mentally, it is a process I deal with every single day.

After 15 minor procedures and three major surgeries, it’s best to describe my appendage as looking like an upside-down cheerleader’s pompom. The doctors have shredded it.

The other side of the equation is how I dealt with the disease for the first few years after my diagnosis. Franky, I didn’t handle it very well.

I stuck my head in the sand. In fact, I was so paralyzed by fear that I didn’t even google “Achalasia” until 2016 when my doctor at the Mayo Clinic warned me that my medications might have long-term dementia effects and I would be consuming food from a feeding tube soon.

And that’s when I woke up.

Inspired by Peter Diamandis’s “moonshot challenge,” I began working to find a cure in short order.

If you think about it, this is an absurd challenge. There is little money invested in curing rare diseases (Achalasia affects 1 out of 100,000 people and the typical age range is 60+. I was 37 when diagnosed).

When I told my doctor at the Mayo Clinic about my moonshot to find a cure, he smiled and told me, “Phillip, your disease ‘is what it is.’ Take your medications and see you in six months.”

I didn’t listen to him.

Those that have followed my story, know I assembled a team of doctors and started working towards the first-ever, one-man clinical trial to find a cure.

After years of meetings, clinical submissions, and delays, we finally received the green light a few weeks ago to start — and everything with my clinical trial has now changed.

So, here’s what happened:

Last Tuesday, I traveled to The Johns Hopkins University Hospital in Baltimore, where a surgeon biopsied skeletal muscle stem cells from my thigh.

The procedure was unique, to say the least — it’s as if someone took a wine corkscrew, twisted it into my thigh, collected the necessary muscle/stem cells and then unscrewed it. Ugh.

Surgeon biopsying skeletal muscle stem cells from my thigh.

The skeletal muscle stem cells they extracted were then cryopreserved, and are currently sitting in a specialized clinic (known as the Cook MyoSite) where they will be cultivated over the next 3–5 months.

There is a chance this step will fail — that the stem cells won’t grow. But if all goes well, we will soon move to step 2, where the plan is to return to Johns Hopkins and my doctor will insert 50% of the cultured stem cells into my esophagus with the hopes that the nerves and muscles regenerate and begin working again.

That’s the hope. And since it’s never been done before (not even on animals), we are flying blind.

I’m ready.

This whole clinical trial process reminds me of a roller coaster ride where you take the long uphill climb in a boxcar, only to peak, pause, and then you finally tip down…and away you go (with butterflies in your stomach too)!

So, step 1 is halfway home — that roller coaster is edging downhill — and I am eternally grateful to the amazing doctors and team members at Johns Hopkins and Cook MyoSite who are taking this ride with me.

My takeaways for you:

1. My advice to you with whatever is going on in your life — don’t wait for the pain to be so severe that you move from inaction to action. For years, I let this disease disrupt me. I did nothing about it, not even googling it. I was such an idiot. Only when the pain was so severe, did I say “enough-is-enough.” I decided it was time to stop being disrupted, and be the disruptor. That mindset changed my life — not only did it inspire me to take this moonshot, it positively changed my relationships and my businesses. Society and social media will tell you to be a victim. Don’t do that. Be the disruptor.
2. It’s not just about my moonshot for a cure, it’s also about my diet. I’m beyond grateful to Dr. Steven Gundry, who tackled the diet side of my disease — I completely transformed my diet and it allowed me to remove all prescription medication from my life. Yes, I have an incurable disease, and yet, I don’t take any medication because my diet is in-line with what my body needs. Dr. Gundry is responsible for this, so consider his anti-lectin philosophy — here’s more about it: The Longevity Paradox: How to Die Young at a Ripe Old Age, The Plant Paradox: The Hidden Dangers in”Healthy” Foods That Cause Disease and Weight Gain, and The Plant Paradox Quick and Easy: The 30-Day Plan to Lose Weight, Feel Great, and Live Lectin-Free.

Chapter 11

“One way or the other, we made history …”
– Dr. Jay Pasricha, Johns Hopkins University School of Medicine

On Monday, February 17th, 2020, I walked into Johns Hopkins Hospital in Baltimore to undergo the first-ever, one-man clinical trial to treat my rare incurable esophageal disease, Achalasia.

Excitement, trepidation, anxiousness — this is how I felt when the nurses rolled me into the operating room for what is considered a “first-of-its-kind” procedure.

Three years ago, I penned an article in inc. magazine (through Bill Carmody) declaring my moonshot and my mission to find a cure for my rare disease within five years. You can read that full article here, but to summarize:

The past five years I’ve been dealing with a rare esophageal disease called Achalasia. It affects one out of 100,000 and skews towards an older population. The odds are a bit more “exponential” when you consider I’m forty-two years old. There is no known cure. I’ve had three major surgeries on it to date, and I’m currently on a liquid diet for two meals a day. My doctors at the Mayo Clinic warn me that I am on a ten- to fifteen-year (at most) trajectory until I will have my esophagus removed, and thereby ingesting my meals through a feeding tube for the rest of my life.

No doubt, this diagnosis was a shock to the system. Time is not on my side, but I’m also a happy patient who knows this isn’t the end of the world, just a new challenge.

So I decided to disrupt my disease. My moonshot? I will be cured of Achalasia in five years. I will pursue and execute on my moonshot until I achieve it. It’s my massively transformative purpose.

Since the Inc. article, I’ve had a lot of ups and downs — from a failed biopsy to healthcare bureaucracy delays. Some doctors reached out to me expressing their opinion that this pursuit was a terrible idea. A few years ago, I even posted on an Achalasia Facebook page that I was taking this moonshot to find a cure — and was summarily ostracized — called a “fraud” for trying to give hope where there was only hopelessness. I stopped posting on support sites.

But there was a lot of positivity too — mainly from a few doctors that agreed whole-heartedly with the plan, advised me, and cheered my progress.

I decided to write about my moonshot on Medium, stay positive through the bumps in the road, and pursue finding a cure for the disease.

And it worked — eventually we received approval for this experimental first-time trial from the FDA and Johns Hopkins’s “Internal Review Board”.

We took our first real step last year when my medical team at Johns Hopkins biopsied my thigh muscle, withdrew skeletal stem cells, and grew them in a lab. (We actually did this twice. The first attempt failed. I had to return a few months later to do it again. The second biopsy was successful, however.) You can read about the process here.

With the stem cells fully cultured, I returned to Johns Hopkins to have them injected into my eroded and non-functioning esophageal muscle wall.

Our hope is that those stem cells will regrow the muscle and thus create functionality in the appendage.

The question I get most over the past three years is why did you choose this stem cell path? Although this esophageal procedure has never been attempted on humans or animals, it has been successful in treating urinary incontinence in animals.

My medical team’s more professional summation:

“Although the transplants are of skeletal muscle, and the native muscle in the esophagus is smooth muscle, we have previously shown in animal experiments, that the transplanted muscle is capable of integrating into the smooth muscle and responsive to neurotransmitters.”

And here is where the story gets completely crazy …

The surgeon inserted 225 million muscle-derived skeletal stem cells into 10 different targeted areas of my esophagus. My medical team deemed the procedure itself a success, due to zero post-surgical complications (infections, blockages, throat constrictions, etc.).

One week later, on February 24th, I traveled back to Johns Hopkins for a check-in and to get a better understanding of my short-term outlook. Here is what they told me:

Since this type of surgery/clinical trial has never occurred, we are flying blind, but the hope is that the stem cells take root around the 4–6 week mark and new muscle grows along the targeted locations in the esophageal wall. It is our hope that the stem cells continue to grow through the 12-week mark (when the muscle growth should peak).

The best metaphor I can think of is that it’s like planting a seed in a garden, knowing in a few weeks it will sprout and continue to grow until harvest.

In mid-May, I will return to Johns Hopkins to undergo a barrage of tests to examine and determine the effects of the surgery — did it even work, and where we go in the future.

I’ll probably know that answer before the tests …

Whether we make progress towards a cure or not, I do want to thank some amazing people who’ve been with me on my journey or just inspired me. They include: The entire Johns Hopkins and Cook MyoSite team, Annie and Parker, Peter Diamandis, Dr. Steven Gundry, Tony Atalla, Bill Carmody, Todd McAllister, Bob Hariri, Drew Pinsky, Neil Riordan, Dr. Bart Rademaker, Tony Robbins, Nancy Lazarus, and Oscar Renteria.

Finally, whether I find a cure, have improved functioning of the esophagus, or if this experiment ends up a complete failure, my life is blessed beyond words.

There was a time, less than four years ago actually, where I was so paralyzed by fear that I did nothing about this disease and my overall health. I outsourced it to some of the best doctors in the world — who told me there was nothing I could do, that I should just wait for the inevitable.

But one day the pain became so great, and I had to make a life-changing decision. Was my life going to be disrupted or was I going to be the disruptor? That’s what the moonshot is actually.

As I was leaving Johns Hopkins the other day, my doctor shook my hand, looked me in the eye and said, “One way or the other, we made history … but remember, we’re going to continue to take it one step at a time.”

One step at a time. I’m good with that.

Chapter 12

“I never said it would be easy.” — Mae West

The past few months have been nuts for all of us. Our health, kid’s school situation, work, and overall well-being was massively disrupted by the coronavirus.

There are silver linings in it all, however.

For me, it’s that before the lockdown went into effect, I underwent the first ever, one-man, clinical trial to treat and possibly cure the disease I live with, called Achalasia.

What’s Achalasia?

The basic explanation is that my esophageal muscles and nerves are dead and most doctors believe it will never work again. From the food I eat, to the way I eat it, everything lodges on the way down. I have to think hard before I take each bite of food. Eating is a big chore.

Physically and mentally, it is a process I live with every single day. There are also many unknown 2nd and 3rd order consequences for me down the road.

After 17 minor procedures and four major surgeries, it’s best to describe my appendage as looking like an upside-down cheerleader’s pom pom. The doctors have shredded it so food can empty into my stomach properly.

Three years ago, on inspiration from Peter Diamandis, I took a moonshot to cure the disease (You can read the full story of how I got to this moment HERE).

Then, on February 17th, 2020, doctors at Johns Hopkins University laid me down on a gurney, administered a large dose of propofol, and injected 225 million stem cells into my eroded esophageal muscle wall. Had this procedure been scheduled for March 17, instead of February 17, it never would have happened, due to the original coronavirus lockdowns.

Our hope was that the injection would rebuild the muscle wall and create functionality. This is an unprecedented case, however — never before attempted on another human being (or even an animal) — so our “hope” was the only thing we were all going on.

Still, that was enough for me to try it (while I kept up a tough and positive exterior regarding the experimental procedure, the truth is, I was pretty nervous).

My original plan was to return to Johns Hopkins in May, for a battery of tests to see if the clinical trial was a success. I suspected that I’d know either way before the test results were revealed.

But then COVID-19 blew up everything and my original follow up appointments were postponed…until a few weeks ago. That’s when I jumped on my first flight since March, returned to the hospital, and underwent a battery of tests and propofol-induced scopes.

Here is what happened….the procedure didn’t work.

I knew deep down that this ground breaking operation probably wasn’t successful, just because I hadn’t felt any improvement in my ability to swallow. I definitely held out hope that I was simply wrong and maybe something was working (that I just couldn’t detect yet).

And if I’m to be honest, my first thought upon hearing the results from the doctor was that I had failed, and let a lot of people down — including those living with Achalasia (who had been praying for my success). I then grieved and felt sorry for myself for a few days.

I know that sounds ridiculous but it’s how I felt. Eventually, I saw the truth for what it is — the only failure is in not trying.

So what’s next?

The good news is that my doctors are willing to try the stem-cell injection procedure one more time. I’ve decided I can’t quit, I have to try again. I am electing to go for it.

What will that look like?

The first procedure targeted my eroded and very thin esophageal muscle wall. This second operation will target the stronger, but shredded part of the muscle wall with the hope that the stem cells make a muscle connection and create functionality.

But that’s not all…

While the first procedure utilized 225 million of my skeletal stem cells, the doctors are planning on more than doubling the amount for the next attempt — to around 500 million.

So, my medical team’s plan will target a different region in my esophagus and double the stem-cell injections.

When will this next attempt happen?

While the coronavirus makes it harder to plan, we are looking at early 2021 to undergo injection #2.

I’ve said this before and I’ll say it again…regardless of the outcome, I’m beyond blessed. Oh, I have bad days — especially when you add in this coronavirus moment.

But ultimately, I have the love of my family, I’m passionate about where my life is going and I accept what the universe gives me — good or bad. I’m alive, I’m not dying — I’m just living with a daily challenge.

In the end, we only have one life, nothing is guaranteed (if anything, the coronavirus has taught all of us that) and if I do my best to live with gratitude and positivity, I will absolutely manifest a better life.

That’s the choice I’ve made.

To all my Achalasia warriors out there, don’t give up. Whether I succeed in my clinical trial or not, we are moving in the right direction.

There is hope. We’ll find a cure one day; I have no doubt.

Stay tuned.

Phillip