ALS Kicking: an update!

From: Garmt@Accenture
Sent: Friday, October 28, 2016 3:46 PM
To: EveryoneIknow@Accenture
Subject: ALS kicking: an update!


Hi! Remember me? No? Well, that’s a shame, but understandable. Percenture, our internal personnel statistics tool, tells me I have been here longer than 77.28% of you. I suppose not every single one of you 289.535 new colleagues can know exactly who I am. That’s why I have become immortal. Curious? Read on.


So, long story short, I have ALS, and Accenture has been kicking that disease. I helped a bit along the way. I thought it would be nice to share three results and a personal lesson I learned.


Surely you remember the Ice Bucket Challenge, back in 2014. This summer, the follow-up message was: it actually worked!! The discovery of two new “ALS genes” was big news for a while. It was a very special occasion for MD Michael Teichmann and me. Why? Well, because the first discovery of those genes happened right here, in The Netherlands, by profs. Veldink and Van den Berg, from Project Mine. Michael Teichmann and Ronald Krabben (and teams) have been helping these two professors since 2013. Do you know what we did? We contributed to this major step in unravelling the mystery of ALS. Not just with our brains, also with our muscles and money, by participating in the City Swims in Amsterdam and New York. There were also Accenture teams in NY and Chicago participating in “Walks to Defeat ALS”. I’ve lost count of the total funds we raised, but it is well over €200.000 in donations.


The ALS Investment Fund started in January 2014 as a ludicrous dream of three ALS patients, two entrepreneurs and one Accenture project team. It was quickly transmorphed into the highest of potential world-changers: a PowerPoint. While the Accenture team worked hard to rationalize the dream by doing market research, working up a realistic business case and fine-tuning colours of the presentation, I was mostly making huge mistakes in selling our dream to investors. We stumbled across our first investor, then our second, then realized we had better bring in experienced experts. We learned that even in the world of investors and investments, lots of people were really willing to help us! We also learned that no investor was going to give us a nickel until every single question about our idea had a world-class answer. Finding those answers became the job of the guy who went all-in for our idea: fund manager Felix von Coerper.


Felix built a team, a pipeline of prospects, designed an innovative fund structure and wrestled with lawyers. There are so many challenges to meet, so very many unicorns to find and a lot of bridges to be built on the road to a successful investment fund … Each milestone is a huge victory and at the same time worthless unless you get to the starting line. In July this year, we got there. The ALS Investment Fund made its first investment! Amylyx, a start-up in Boston, now has the money to develop something called AMX000035, which has the potential to significantly delay ALS progression.


I have a lot of things to be grateful for and proud of. The biggest of them all is this: more than twenty Accenture MDs, including our CTO and someone named Pierre, have put their money where their mouths are and made a personal investment in the ALS Investment Fund. Their $&€s will go forth and multiply and help cure ALS. I will personally make sure that the right investments are made, being on the Investment Committee of the Fund. I get to ask tough questions before casting my vote, a proud privilege.


The third result to share is about data. MD Alexandra van der Tuin thought kicking data around with our Analytics skills was a good idea. Guess what? It was. First, she set her own team loose on a set of ALS data from 8500+ patients. Steven Nooijen dove head-first in 38 million data points. He nearly drowned, so they decided to call in reinforcements by organizing a hackathon. The ALS Data Challenge was a huge success, that I sadly couldn’t attend due to illness. Luckily, the team had a video made that impresses by showing what brainpower we can gather. Watch it here. The relevancy of our work is eerily spot-on. Remember Amylyx, the company from two paragraphs ago? In the development of their medicine, they use the exact same dataset we “hackathonned”. Our work is of direct benefit to them. The Amylyx CEO confirmed that when he visited me a few weeks ago. Let’s see if we can help them some more, shall we?


What I’m trying to say with all this, is that together, we made a difference. We kicked an ALS testicle. This disease may have eaten me up, but all of you helped to pull closer the day when ALS is as harmless as a common cold. Regardless of the exact size of our contribution so far (we’re not done yet!), to me, this is a Big Difference we’ve made.


Now, let me share a personal lesson with you.


We all know the importance of communication. The only means of communication I have left is the movement of my eyes. In some situations, they are really effective. A blink can convey a thousand thoughts, as long as the person I’m blinking to is telepathic and/or my wife or a caregiver. In most situations, though, they aren’t that useful. I can type with the help of a sensor, but even that is diminishing – the ALS is nibbling at my eye muscles. Chiselling letters in granite would be faster than this! Hey, if this is the first mail you read of me, it’s probably the very first time you read an eyetyped piece of text! You’re welcome, I love giving people new experiences.


So, communication. It occurred to me that that’s where the magic happens. The very best part of my job was talking and listening. In a brainstorm, giving a presentation, preparing an important meeting, exchanging thoughts over coffee, even at a tough customer meeting where you get yelled at, all of those times where you search for common ground or combine your half-baked ideas with someone else’s half-baked ideas… that is where the magic happens, that’s where synergy occurs. You have absolutely no idea how great the gift of your voice is. Thank your tongue, lips, lungs and vocal chords. You’re blessed to have them.


If I look back upon my life, I clearly see where I came from. Schooled as an engineer, I started out in network engineering. I was a huge nerd, proud of it, too. I could talk for hours about OSPF and had no qualms about telling my clients what I thought. Usually my thoughts were not subtle, and I offended a lot of people by telling them they knew nothing. I learned first to bite my tongue and then to change my perception. Seeing differently made me think differently. I took jobs in sales and management. I sold networks, developed network opportunities, managed network consultants, made IT infrastructure interesting enough to talk to CEOs about. After twelve years I was mature enough for Accenture. I joined in Infrastructure, again, Networks. It felt like coming home. Accenture was a treasure trove of interesting work, superb colleagues, freedom, and … ok, you get it. I loved my job. I still love it. Just before I got sick, I reached the top: I was accepted into Strategy. Sadly, I could only do very few dream assignments before getting ALS.


So, immortality. I’m probably not going to live forever, but I intend to live on. I can see where I came from, but looking ahead is like staring into the void. What will you leave behind once you’re gone? Of course, your children. Maybe some changes that you made. What part of your identity will remain? Accenture evolves so fast that it is likely your name won’t be remembered for long. If you have a young kid today, and you were to leave Accenture tomorrow, how many people will remember you when your kid is mature?


In my case, lots! Why? Accenture Strategy NL has attached my name to an annual award.  You won’t have to get ALS to qualify – just be the most inspiring/have the biggest impact/… (the criteria and nomination procedure are TBD). It’s not official yet, but needless to say, I’m prouder than a peacock about it, so let’s hope Sander forgives me for running my mouth.


Time to sign off. Oh, last point: I wrote a book about living with and kicking ALS. Based on the hundreds of reactions and the fact that it’s a top-10%-seller, I guess it’s not a bad book. Everyone in The Netherlands has either read it or doesn’t want to read it. The rest of the world is next, as the English translation is ready! Visit to read or order the Kindle version.


Thank you, reader, if you made it this far. Writing this simple email took me a full week, I am grateful you took the time to read it.


Till next time,



Garmt van Soest

Senior Manager

Kicking ALS in the balls”