Amazing

/in , , /door

Aerosmith, Get a Grip, 1993

From: Garmt@Accenture
Sent: October, 2017 3:46 AM
To: EveryoneIknow@Accenture
Subject: I’m finally leaving Accenture

Hello,

Like so many others, it’s time for me to send you a note that I’m off to a different place. Like some leavers, I have no idea where I’ll go next. We simply don’t know what comes after death. Science has little data on this particular topic! Anyway, you have guessed by now that I meant it when I said I would work for this company for the rest of my life.

I came to learn. I viewed it a bit like a stint in the corporate army, where I would be properly trained for a few years, pass or fail the exam of becoming MD and thus find out what I was really worth.

It didn’t turn out that way. Instead of a corporate army I found a home, the first job after ten years with three previous employers, where I could just be myself. You can’t imagine the feeling of freedom I found. And yes, I got to learn everything I wanted. I even once got to screw up an important project without getting fired (sorry KPN). The exam I had expected came in a different form. Instead of playing the promotion roulette, Accenture gave me total freedom and the whole company to throw at the disease that ate me alive. I think that challenge, of what to do with that freedom and the whole company, was an exam. I think I passed.

You know you all have the same challenge, right? Your degree of freedom may be different, but that’s a mere detail.

Time to get sappy. Colleagues are not like family. I can quit being your co-worker but I can’t quite quit from my siblings or parents. Yet, at times we spend more time with our project team than with our spouse (said Nick Cave to bandmate Warren Ellis, `I’ve had more meals with you than my wife´). I was closer to some of you than someone who just shares my last name. We shared passion, commitment, extra hours and much more. Sometimes we shared love, for Accenture’s IT Operating Model (ITOM), I think, or for business development or for something really important like ITOM, or for each other. If I imagine my family, there are quite a few (ex-)colleagues amongst the Van Soest, Da Costa, Van Den Bosch and Werksma’s. Colleagues can be like family.

At the end of your life, all you have left is what you have given. When the end comes for you, you’ll have given me a lot. Thank you.

All the best, maybe see you at one last Friday Afternoon Drink, right after my funeral this Friday 27 / 10.

Garmt van Soest

Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

ALS Kicking: an update!

/2 Reacties/in , , /door

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 www.evenwithALS.com 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”

Everything ready from the dark side of the moon…

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From: van Soest, Garmt
Sent: Wednesday, April 29, 2015 23:13
To: Everyone@Accenture
Subject: ALS update: Everything ready from the dark side of the moon…

A nice bit of trivia to start your day: Which movie from my birth year does the line in the subject come from? Don’t get confused with the 1973 Pink Floyd album, not even Close. Neither is it an Encounter with Google that you need to answer this. Just keep guessing, your Third guess is bound to be right. Come on, be Kind, give it a go, the answer to this riddle is right in front of you.

My brain has time to think of stupid little riddles like these while it waits for my eyes to hit the right letters. Riddles that, given the average age of Accenture employees, will most likely be solved by no-one, but hey, I am sure your brain is tickled, and if you are still eading, hello!! and welcome to another update from the ALS fighting front!

It has been quiet from the ALS fighting afront, that is, from me to you. The battle has been getting more and more personal, and I figured you weren’t necessarily interested in the behemothic Brasil/Kafka-esque bureaucracy I had to fight for six months to get the right electric wheelchair. I say this in full sincerity, starting an investment fund is easier than working with care-companies.

Which brings me nicely to a professional update. Qurit Alliance! Our investment fund is still gaining momentum. Five members of the Qurit foundation, four scientists signed up for the scientific advisory board, three seed investors, two fund management companies, one fund manager with the right experience and skill set, about to start the investor roadshow! I know, I wish we could announce the first actual investment, or the first fifty million, but we will get there, even if it is not yesterday. In fact, we are getting there. I hope to share an update soon that is guaranteed to impress you. Stay tuned!

The other initiatives have grown up and left the nest. For instance, colleagues from NY will participate in the Walk to defeat ALS again, as well as join the New Amsterdam City Swim. Michael Teichmann is still supporting MinE, and colleagues from our office in Washington are telling their kids about it. Ronald Krabben is still helping Prof. van den Berg with TRICALS. Bob is getting Dutch swimmers ready for the Amsterdam City Swim. There is now an official mailing list, see cc, maintained by timothy.long. Et cetera, et cetera. I just finally can’t in good conscience claim any credit for these activities anymore, as my ability to meddle, I mean, contribute, is somewhat small these days.

I can move my eyes, and with that, the world, but I don’t have a lot of other functionality left. It feels like I am slowly being frozen, and the thing I had not counted on, is that it is actually pretty hard on the brain as well. It is functioning as it was, but adjusting to such a limiting interface, as well as dealing with all the changes that a lifestyle without exercise, booze, travel, etc brings. Kudos for prof. Hawking, who just kept working throughout his ALS, but then again, he had fifty years to stomach what took two years with me. And I type a lot faster than him, too, so actually…

Speaking of cosmology, it is why I picked the subjectline like I did. I feel a bit as if the whole adventure of ALS launched me, right off into the stratosphere and beyond. I got to soar, fly, see the world from a perspective I had never seen before, enjoy the warmth of the sun and the momentum of the launch. Now I am travelling through cold space, freezing, eclipsed every now and then by a planet or something, which is why I sometimes take really long to reply to email or fill my timesheet. Gravity still binds me to earth, where everyone is still merrily living along. My transmissions are still received, sometimes a colleague visits by means of looking at me through a telescope. Or, that is what I imagine it feels like to them if they realize that inside the heap of body parts they are addressing is the… brain of the quirky energetic guy that kicked their asses in a discussion on that one project.

Wait, wait, don’t run off, c’mon. The thing is, we have no idea how this story will end. I am still open to any possibility, as long as it is a happy one. And so far, I am more happy than not. We’ll see if I vanish into deep space or, maybe, I reach a zenith, and turn into a comet, or perhaps a meteorite, heh! You might not be rid of me just yet.

One thing that helps to stay close to Accenture is to be in touch with the type of information that normally doesn’t traverse email. Yes. I am asking you to update me on office gossip, or perhaps just tell me how your day was, once or twice a year. Doesn’t need to be long, as long as the gossip is good, I will feel a real part of Accenture, still.

Ok. I have said more than enough. One final rant and I’ll sign off.

With talking and moving becoming somewhat impossible, I found myself retreating into the type of hobby/work I used to have at the point in my life where I was as clumsy in interacting with other people as I am now. That is, nerd around with technology. We try to hide it, but the ugly truth is, scratch the thin layer of good behavior off of a tech strategist, and you will find a nerd. I got the idea this weekend to draw a network/systems architecture map of my home setup. Now, I used to do this at several large ISPs in the early 2000’s. These companies had gone through so much M&A with subsequent rigorous rounds of layoffs that they had no idea what they were running and hired us to audit and find out. And, I tell you with a strange mixture of shame and pride, the resulting map of a conglomerate of various legacy network meshes that was the proud backbone of some major telco, it looked a whole lot more simple than my home setup. If you are one of the colleagues that visits me, and I ask you to put up some Thom Yorke, right after you connected to my wifi and found my streamer with Spotify Connect, which is neat because it separates control from source, giving the sound quality of my streamer while allowing me to control Spotify with my eyes using the desktop client, expect me to sigh as you have to use  the bubble upnp app running in the oracle virtualbox emulating android, telling my streamer to get the content from my plex home server, because as we all know, Thom Yorke might be the best musician in the world, he is not on Spotify, so we have to stream the FLAC straight to the Cambridge Magicstream, right after you turned down the volume with the Harmony app on my phone. And that is something as simple as music. Wait till we get to printing! Let’s just play a record instead. And if you are of the average Accenture age, a record is a black flat round thing that, long before you were born, was the Spotify of its age, just without a shuffle-button. Oh, the stories this old man could tell you!

Thanks for reading, ‘till the next,

Garmt van Soest
Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

 Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

ALS is still here, but so am I

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From: van Soest, Garmt
Sent: Sunday, November 23, 2014 21:20
To: Everyone@Accenture
Subject: ALS is still here, but so am I

 

Hello everyone,

If you don’t know who I am or why I am emailing you, let me tell you an anecdote. The other week, someone asked me for my CV. With the arrogance normally reserved for young Analysts, I realized that the best answer I could give at that point was: “Just Google my name, that is easier.”

The last time I wrote to you, just after the birth of our daughter in July, I was still able to walk to my car and drive safely. That is, drive as I usually would, and whether that counts as safely is a point of much debate, but I digress, as I always do. Four weeks after that I was in a wheelchair, no longer able to drive or walk, buy very able to watch the Amsterdam City Swim. Nowadays I am pretty much helpless; I do not yet need 24/7 care but the list of tasks I can do independently shrinks with each last bit of muscle that gives in to whatever is happening in my motor neurons.

I had the intention to stay active and be at the office regularly, but the disease overtook me, and since Accenture is not a spectator sport I have not been around anymore. I am in touch, every now and then I email or see colleagues, or I receive a card or a gift, letting me know that I am out of sight, not out of mind. I keep on noticing how warm an organization our company is. I receive positive energy and love from ten corners of the world, and that gives me a lot of peace.

I was like you, dear reader, on top of the world an loving every minute of it. And if you don’t love every minute of it, hey, I don’t want to preach, but just imagine me for a second, as you type at your keyboard, whispering over your shoulder: “I was faster at that than you”. Or imagine me the next time you take those creepy steep stairs to the 14th, running past you by taking three steps at a time, so unprofessional in my hopeless attempt to undo my lateness for the next meeting. Or imagine me, the next time you are driving too fast, whispering over your shoulder again: “I was faster at this, too”. Or imagine, the next time you are presenting in front of an audience, me whispering over your shoulder: “Are you noticing how great it feels to be standing up?”. Or, if you want, imagine punching me in the face, because all that unwanted shoulder-whispering is really annoying,  and notice how satisfactory that feels, and grin. Imagine, anyway, John Lennon recommended it. You get what I’m preaching at.

The news isn’t all bad though, in fact, there are plenty of good things. Like you, I still take pleasure in pushing myself. My challenge is no longer as abstract as cutting a gazillion dollars of cost out of the operation of some huge corporation to fulfill their mantra of ever increasing stakeholder value. My challenge is to insert a joke into a conversation, when I have to type that joke with the right side of my left thumb at one letter per two seconds, which is a very interesting trick where you have to balance timing, length of wording and dexterity in finding the speak button before the conversation has moved back already to Syria and your remark about that magician falls flat. Or, your challenge might be to seek a thrill? No longer do I need to tire myself with parachutes, bungee jumps or expensive diving holidays to get excited; adrenalin floods me when I try to balance myself and find out that the muscle that held me upright yesterday now no longer works, giving me exactly one second to find a solution or mumble for help before I fall. I say this without a trace of irony or sarcasm. My challenges now are no less interesting now than those I had as a senior manager. Having said that, I am still not entirely certain I would recommend ALS, unless you want to lose weight so badly that you are really desperate. Ha!

And more good news. The reason, or excuse perhaps, for sending out these ramblings was originally to share updates about the fight against ALS. I just have a few projects left that I am actively involved in. Project Xavier, project MinE and Treeway are all progressing very well. Xavier saw huge attention from the press, raising the profile of the disease even further. Philips and Accenture are deciding if and how to market the product. In October, we had the international kickoff of MinE; I think we had organisations from fourteen countries in one room! Nadeem de Vree is still supporting the lead researchers at the UMC Utrecht. The Accenture Innovation Awards and the CIO day paid/will pay attention to the projects and to Treeway. Finally, for the Qurit Alliance, our ALS investment fund, we have made some big steps. Two fund management parties have been downselected from more than forty candidates, ensuring that we have the right track record, equity expertise, market position and investment experience committed to the initiative. Two is also the number of confirmed cornerstone investors. Two is also the number that, taken to the power of three, is my lucky number, so the coincidence is uncanny!

Well, time to go.  I would say a lot more, but it would come down to the same and I hate to repeat myself. I remain your colleague, even if I won’t get to see you or work with you again. This isn’t goodbye, it is just me repeating myself that I have had such, such an excellent time working with or for or just in the same company as you. Who knows, the future might hold some surprises for us. I will be fighting for a while to come, but as you can read the fight is getting more and more personal. Yeah, if I was ALS, I would try to get rid of me fast, too 🙂 

Thanks for reading,

Garmt van Soest
Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

 

Summertime ALS Update

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From: Garmt@Accenture

Sent: Wednesday, July 09, 2014 1:04 AM

To: People@Accenture

Subject: Summertime ALS Update

 

Good news everyone,

 

I’m still alive! If you don’t know me, in my case, that’s actually an achievement. I had wanted to subject-line this email “Partir, c’est mourir un peu”, but then you would get the wrong idea. I am not going anywhere. Of course, I am dying bit by bit, like that corniest of poems (in Dutch), but then again, so are all of you. Each project you finish, each toe nail that you clip and each thought you forget, pieces of us are left behind every day. So we don’t really die anyway, we are just being reborn slower then we die.

 

I’m pretty sure that paragraph won an award for most inappropriately faux-serious opening statement of any email you have ever read. Are you still with me? I was about to update you how we’re doing with kicking ALS in the balls. First of all, my official Accenture-approved business card now says just that: Garmt van Soest, kicking ALS in the balls. I notice as I dictate this that I talk a lot about myself; I should be focusing on making this not about me so much. So anyway, a few updates:

  • Cause. Project MinE is still going strong. We have additional sponsors; Mr. Van Rompuy, for instance (Accenture had nothing to do with this, I just think it is a cool achievement). The Accenture team, led by Michael Teichmann, is getting ready for the next phase: design, after successfully reviewing several technology vendors, together with the UMCU.

  • Care. Project Xavier is past the prototype stage. 2 weeks from now, you will see a big press release, so I won’t say too much further.Another Care initiative that we are starting is improving existing eye tracking solutions. It’s not as Sci-fi as Xavier, but we should be able to revolutionize an industry J Justyna Tarwid is leading the effort to create a low cost eye-tracking solution by helping the development of Click2Speak and integrate it with Eyetribe. Coders wanted – I think c++! Apply with me or Justyna.

  • Connect. The TRICALS platform has gone live! Another Connect initiative is to provide the ALS-fighting community within Accenture with a place to connect and collaborate. We have so many ALS initiatives that no one has the full picture – we have a document that lists most of them; click here to see it: ALS_Initiatives_Overview_20140709_External

  • Cure. Treeway is still going strong; in addition to this, Elmer Spruijt is coaching another startup working on ALS drugs.

  • Capital. Major progress here! The fund now has a name: Qurit Alliance! Check out the website: www.qurit.org; you can also find a recap of the investor day there. Best news of all: we have our first investor!! Right now, we have a fund creation specialist working with us to recruit and select the investment team that will ultimately run the fund. Our Accenture network has already delivered one successful candidate; if you know (people in) the world of private equity, please contact ralph.staal@accenture.com for a description of what we are looking for.

 

I will keep it short today, the guy who is typing this for me wants to go home. I have to warn you, this ALS thing is a productivity killer. Just the doctor visits alone: there’s the speech therapist and the neurologist, the physical therapist and the psychologist, the “revalidatie-arts” and the “dietist”,  the ergonomics therapist and the guy at our local council who is supposed to give me a disability parking card who hasn’t returned the past 27 calls, the lung doctor and the recurring MRI appointments and of course the placebo, I mean, the experimental medicine that is not doing anything so far, but which makes you stay a day in the hospital every two weeks. I feel like Humpty Dumpty; all the kings men… In January I sent more than 1066 emails; nowadays I’m happy if I get to 25 a week. Adapting to it is getting more and more of a struggle. I always tried to keep every single little promise; I’ve had to learn not to say “I will send you that tonight” or “I promise I get back on that next week” as I simply couldn’t keep my commitments anymore. That sucks, I still get so many offers for help, but I just can’t tie it together anymore. For everyone who is waiting for a reply: I’m genuinely sorry. I wish I could live up to my promise to ruin your nights and weekends with ALS fighting work 🙂

 

Geez, did you notice that? That almost sounded like I was starting to complain! Let’s see, what would a sage like Crocodile Dundee say? “No worries”, of course. You'll still see me around the office, come have a coffee with me. I’m still involved in the projects; even if it’s just a day per week. For the rest of the time, if only something exciting and life-changing could pop up that would radically change the way I experience life. Oh, wait… that’s actually on the agenda for….. 14 days from now! I gotta go, I have to practice not sleeping and panicking over the temperature of a bottle of milk!

 

Cheers all,

(a beer on me for those of you who got the futurama reference)

Garmt van Soest
Senior Manager
Accenture Strategy
“Kicking ALS in the balls”

 

 

This is the link to the powerpoint that was attached to the e-mail:

ALS_Initiatives_Overview_20140709_External

Fighting ALS: Another update

/in , , /door
——– Original message ——–
From: Garmt@Accenture
Sent: Saturday, May 3, 2013 2:21 PM
To: People@Accenture
Subject: Update from a malfunctioning consultant
 

 

Hello all,
 
If you don’t know who I am, you are in the same entity (and therefore mailinglist) as I am, or was. If you do know who I am: Hi! Me again, here to update you about our fight against ALS, the killer disease that is starting to get sorry it took me in his jaws. It’s been nearly three months since I wrote to you all (I tried writing an Accenture blog; it’s too 2014 for me) so there is lots to update. 
 
First of all, congratulations to Joerie Nijhuis for winning the Corporate Citizenship Award 2014! In no way whatsoever do I feel envious of him (my ears burn as I type this), second place is a good achievement too, ahem. But corporate citizenship is about giving, and it feels like I have mainly been asking and receiving over the past nine months. I don’t intend to make every single update about gratitude, so let’s skip to a few updates about the initiatives:
  • Cure. Treeway is well underway to get their first ALS medicine ready for testing. IF it works, it may have a delaying effect on the disease, buying us more time. I’ve become an official partner in this company (with permission from Accenture of course) that was founded by Bernard Muller and Robbert-Jan Stuit. If you speak Dutch, you can see them talking about how it started: LINK TO PAUW & WITTEMAN
  • Cause. Project MinE is well underway; it is internationalizing fast (is that a word?) with Belgium, France, Portugal, the UK all in talks to join up. Yusuke Nirahara from Accenture Japan is working with a group of colleagues to bring the project to Japan; Rune Indrevoll from Norway is building the bridge to the Nordics. Michael Teichmann is working with the core team here in the Netherlands to define the functional requirements and technical architecture to analyze the DNA information of 22,500 people, and we are talking to the Welcome Trust about partnering up.
  • Care.  Project Xavier is a collaboration between an electronics giant and Accenture labs, led by Bob Koppes and Ray Pijpers. The goal is to create a device that enables ALS patients to control their home with their minds. Science Fiction made reality. High Performance delivered. Every single Accenture slogan is applicable to this project! The prototype right now can control lights and TV, is connected to a Google Glass, a Tablet app is being developed. 
  • Connect. Ronald Krabben and team have delivered the technology platform for TRICALS, an institution led by Prof. Van den Berg, aimed at connecting patients, treatment centers and drug development companies, with the goal to reduce the time it takes to test new medicine for ALS. The website is due to go live next month!
  • Capital. The biggest bang is yet to come. On May 19, we are launching the ALS investment fund (we will also unveil the new name on that day). Check out the PRESS RELEASE and the WEBSITE. If you know any interested investors, please feel free to send the attached email. We really have world class names and world class infrastructure behind this; it’s Impact Investing at its best! Or, as another friend put it eloquently, put your money where your meaning is! Don’t hesitate to contact me or Ralph Staal if you have any questions about the Fund.
 
A SPOTLIGHT ARTICLE was published right after my previous update; it led to a tsunami of responses. It is so overwhelming and humbling to see how engaged our global community is! Many people offered their support; if I haven’t gotten back to you yet, please mail me again. We will be very happy to enlist you ϑ. For those of you that have been put to work: sorry for taking up all your free time, your efforts are so diverse and so encompassing that I cannot even describe half of them here in this email. Special thanks to Amalchi from my favorite city New York. He rallied a big team and an impressive fund raiser to participate in the “ Walk to defeat ALS”. They are starting today; wish them well by shooting Amalchi Castillo an email. Later this year, I will be asking the same for our colleagues who joined the Amsterdam City Swim…
 
Then a bit about how I am doing. You noticed that I talk a lot about these projects because right now it is truly my dream and my passion to work like this. I won’t be able to do so for that much longer… That is partially because my hands have come to the point where I type only a few emails per day (Bas Tax is typing this for me, as I am shouting at him “NO YOU MORON, AMALCHI IS SPELLED WITH AN I, EVERYONE KNOWS THAT”), and one of these days I will get so clumsy that I represent an office safety hazard of sorts. Mostly it is because I am getting ready to be a father. I already communicate with our baby; I tickle Iris’ belly and she kicks in return. I’ll try to scale down as of July so I can enjoy an early retirement with family in our new house (whoever approved our new mortgage… oh, wonders of the financial world!). Don’t count on being rid of me completely; as long as I have a muscle to move, I will stay in touch.
 
Have a nice weekend everyone, thanks for reading this far!
 
Regards,
Garmt

Accenture Colleagues join Garmt van Soest in finding and funding a cure for ALS

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Time for another guest blogger. This time it's James Masters, who wrote an excellent article for Accenture's internal communications group. The article below was on the front page of our internal Accenture portal!! That means it's got more readers than the NRC Handelsblad!!

 

vansoeast_lglGarmt and his wife Iris are expecting a child this year.

If the world is to ever find a cure for ALS (Amyotrophic lateral sclerosis), then maybe it began the day Amsterdam’s Garmt van Soest learned he had the neurodegenerative disease.

Garmt, a senior manager in Accenture Strategy, was told in August 2013 he had ALS, also known as Lou Gehrig’s disease or Motor Neuron Disease (MND).

“It was a pretty bad diagnosis to get, but I wasn’t going to take it lying down,” Garmt said.

It wasn’t long before he made an impactful decision on how he would combat the fatal disease. As a matter of course, taking action in cooperation with his friends and colleagues in the Netherlands was a manifestation of Accenture on its best day.

Considering the reputation for scope and complexity of client engagements Accenture takes on, finding a solution to accelerate a cure for ALS seemed achievable to Garmt. He and Netherlands leadership quickly shifted into project mode. This wasn’t just Garmt’s disease to battle alone; they were all thinking big in their quest for a cure.

Garmt and his colleagues, including two other ALS patients with backgrounds in entrepreneurship and two biotechnology industry experts, targeted the global investment/venture capital community to fund drug development that can generate up to US$15 billion in returns. Working together, they drafted a strategy for an ALS investment fund, built a business case and operating model and wrote their “elevator” pitch.

Working through January nights and weekends on the plan with the core group, Garmt says it’s been almost like normal Accenture project work…“I’m so humbled by that show of support.”

There’s no money in the fund yet, but Garmt is buoyed by the sophistication and comprehensiveness of the developing effort. He notes “some pretty big names” from the investment industry are connecting with the initiative to offer coaching and connections.

vGarmt enjoys some time kitesurfing.

Fighting ALS on three fronts
As a result of his own ALS diagnosis, Garmt has added himself to the Project MinE initiative. Project MineE is studying the cause of ALS at the genetic level by mapping and analyzing the entire DNA structure of 15,000 ALS patients—the largest genetic research project in the world today. Project MinE is an initiative of two Dutch ALS patients in collaboration with the Dutch ALS center and ALS foundation.

Responding to Garmt’s call for assistance to Accenture’s Netherlands community, Michael Teichmann, security executive – Technology, is serving as the Accenture project sponsor and coordinator for Project MinE. Mobilizing Accenture’s strengths in big data, analytics and IT strategy supports Project MinE’s mission.

“At this moment we are scoping the challenge and defining how Accenture can best help Project MinE succeed in its objectives,” he said.

On another front, Accenture volunteers are working with world renowned ALS researcher Dr. Leonard van den Berg on an initiative to reduce the duration of clinical trials and thereby get ALS medicine faster to market by connecting patients, ALS centers and biotechnology and research firms.

Responding to Garmt’s call for help, Ronald Krabben, client technology executive – Technology, took on the role of leading development of a cloud-based digital platform and marketing initiative that, in essence, will connect all the dots in terms of accelerating ALS research, funding and mobilization toward finding a cure. The project launched with the help of US$106,000 in seed money from Accenture.

If successful, the implications are huge not only for ALS patients but for Accenture’s business going forward.

“This work can be used as a business model for combating other diseases,” Ronald said. “We are gaining traction with our Life Science group, but first we need to show this thing works.”

In addition to these initiatives and the impending investment fund, there’s another encouraging project getting off the ground. Ray Pijpers, client executive – Communications, Media & Technology, is working on a thought-controlled communications and home control device designed specifically for ALS patients in later stages of the disease. The resulting Project Xavier is finalizing a partnership with one of the largest electronics companies in the world to bring the device to fruition.

Correspondingly, the city of Amsterdam is backing the fight against ALS and has engaged in a number of supporting initiatives, such as a local “city swim” event that raised 1.7 million euros in 2013. The Accenture team raised 40,000 euros in donations and joined the swim with 40 people in just a few weeks.

All in a day’s work
While ALS may have slowed Garmt’s speech and motor functions, it has had the opposite effect on his mind, mission and ability to rally friends, colleagues and Accenture leadership toward a cure for ALS. In fact, his work toward a cure is now his work for Accenture. Currently, his weekdays are spent one day at home, a day at the hospital and three days in the Amsterdam office.

“My official Accenture role is now spending the rest of my life kicking ALS in the b****,” Garmt says. “Accenture is helping me any way they can. It’s really quite impressive and extraordinary.”

Garmt talks frankly that the average survival rate for ALS patients is three years, but he’s just as candid in his belief he can have a long life ahead. Thus, he made a conscious decision with his wife Iris, a neuroscientist, to have a child.

“ALS is a problem that can be solved, and we can contribute to that considerably,” he says. “With some luck we can accelerate finding a cure so that I can see my unborn child grow up."

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So how are you all doing?

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From: Garmt@Accenture
Sent: Friday, February 07, 2014 2:58 PM
To: People@Accenture
Subject: So how are you all doing?

 

‘coz me, I’m doing just fine. Mostly. I’m feeling a little sick these days (ha! – just a small flu).

 

If you joined recently, I’m a guy with a funny disease that sends out long updates on how I don’t intend to have my life cut short. You’re perfectly welcome to ignore my ramblings.

 

I was always fond of my job, but I’ve really come to love it over the past months. I never understood managers who said “I’m so EXCITED about this new whaddyacallit (strategy/product/gizmo/organisation/whatever)”. Yet those are exactly the words I’d use right now – I’m so often so EXCITED about what we’re doing… The investment fund Marc Dijks is helping us set up, the research institute that Ronald Krabben worked with Prof. van den Berg on, project Xavier that Bob and Ray are taking all across the world, and then there’s Treeway, the biotech start-up that Edwin is coaching, who are going to bring more ALS drugs into a clinic in one year than the whole industry did in five years, etc etc.. I was compiling a list of everyone who have helped to get us this far by spending their weekends and nights (please stay chargeable people) and I came to more than 60 names so far. And that doesn’t even include the 40 of us who joined in the City Swim. Man!

 

As an example of how this goes into action let me tell you about a meeting we had with the team of Project MinE, the largest genetics research effort in the world, aimed at finding the genetic roots of ALS. At the first Accenture-MinE-meeting, I understood exactly the first 24 seconds of their presentation about GWAS imputation in WGS data. Imputation, is that even a word? Smart minds at work there…! Luckily, we had brought our Enterprise Architect with a Ph.D. in DNA data analysis (this is not a joke), so she could follow, but the rest of us were as the popular song from Led Zeppelin goes: Dazed and Confused. Then we asked: so what are your challenges actually? What would you need to make this project go any faster? “Well, we have some data quality concerns, and our storage system takes three months to just download the DNA data that we received last week (this is also not a joke), and we are figuring out how to get different parties across the globe collaborating on this project, and data privacy is a tough issue with DNA from so many countries, and why are you Accenture guys smiling like that all of a sudden?” Ah, because this happens to be right in the middle of what you guys do best. Isn’t that convenient?

 

At first, an incurable disease is like ‘well, crap, that’s it then’. Like any unsolvable problem, like trying to attain world peace, no use trying. Best to go sit on a mountain and enjoy the life that’s left. But every now and then somebody goes “If only there were something I could DO?”. And then I get to say: well, yes, actually, here’s an action list, I’ll put you down for these fourteen items, shall we, and don’t be late in delivering please, or Lucas Fung will be chasing you. My old MBA class started to chip in and now there’s no expertise we don’t have access to. And with all those small and big individual contributions we are really getting somewhere. I quote Prof. van den Berg, the biggest mind in ALS, who says: “Accenture is just what we needed!”. I quote the 800mln-fund manager that saw our first teaser for the investment fund: “Well. This is unique. Would you like to house it under my company? I’d love to be a part of this”. And I could go on and on. We’ve got so much power for change inside of us, inside of this company. OK, I’m getting a bit new age here. Sorry.

 

I do miss the customers though, now that I spend my time on these things (some people are never satisfied). Let’s get that fund up and running so it can be a worthy Customer.

 

On to a more personal note. If you see me in a sweater it’s not disrespect. I’ve known Javier for nearly 10 years and last week was the first time ever he saw me dressed in something else than a suit. But, cufflinks and buttons take a lot of time with one hand (especially the one on the sleeve with the working hand). Right hand is still working but getting pretty weak and clumsy. Therefore, a word of caution: Sit across from me in the restaurant and you have a serious chance of having my soup all over your plate. Oh, and if you see me around the office carrying a Mac, it’s because I’ve decided that life is too short for a Dell (sorry Xander). And I’ve got a Stephen Hawking voice! Only my artificial voice doesn’t sound like Stephen Hawking, it sounds so much like me that most people that hear it at first don’t realise it’s a computer talking. I don’t need it just yet but it might mean that you _still_ have to listen to me even if I can’t speak anymore. Ha!

 

Enough joking now. Kicking ALS in the balls is good fun; this paragraph is serious. For the next few months you’ll still be seeing me, 2-3d/wk in the office. Then in July and August I go on a short 80% retirement break (I’ll call in sick, heh). Because, this summer it’s time for the only item on my bucket list to get ticked off. Iris is planning to give birth to our child on July 22, although the doctor doing the echo/sonograph said that the kid looked like he/she was holding a phone to his ear and was trying to figure out how to speed up this process of pregnancy, so who knows! … enough joking. I’m so without words when I talk about this topic.

 

One last thing. I managed to dent the most expensive car in the Zuid-as holding the best lawyer of Europe (in 2011 and 2012 at least), just the other day. Don’t ask me how it happened but the end result was that her whole department will be joining the Amsterdam City Swim this year. Time for us to start practicing – no way that lawyers are going to outswim us!

 

Cheers all, keep on contacting me if you want to join the fight!

Update from a malfunctioning consultant

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——– Original message ——–
From: Garmt@Accenture
Sent: Wednesday, November 27, 2013 11:20 AM
To: People@Accenture
Subject: Update from a malfunctioning consultant
 
Well, strictly speaking, it’s just my DNA that’s malfunctioning, not me, but hey. Warning: E-mail-etiquette breach ahead – long mail, personal content, difficult sentences, sent to a lot of people. I don’t intend to make a habit out of this but I figure I’d like to keep you up to date. Apologies if it’s considered spam.
 
On a professional note.
I originally thought – I’ll take a few weeks off and then let’s get back to normal. It’s turned out a bit different than that. I’m back at work (partially), I do some client work but thanks to the generosity of Accenture most of my energy is spent on leveraging everything we have in our portfolio to, well, kick ALS in the balls, to put it as eloquently as I can. Accenture (i.c. Gert and Manon) gave me freedom – free of chargeability targets, deadlines, free of most financial worries, etc. Wow. Free to spend the rest of my professional life as Gert and me see fit. I’ve checked with my revalidatiearts (who sees hundreds of ALS cases) and she was as flabberghasted as I was. I really can’t express my gratitude so I won’t try here. I share it with you as I believe you deserve to know you work for a company that makes the right decisions in tough times.
 
On kicking ALS in the balls.
A few weeks ago, I wrote “It’s time to get serious” to the friends and colleagues that are involved in the fight against ALS. Or, perhaps better to see it as the quest to improve the machine that solves the puzzle of ALS. Yes – with passion we’ll make that machine greater! You’d figure this matter was serious enough to begin with, but over the past weeks, enough pieces clicked together to create an actual real chance of making a real difference. The plan that we are putting together is not just the most interesting project I’ve ever worked on, it’s not just fun to do, it’s not just for the greater good – there’s a real chance that we get to a cure in my lifetime. A chance only marginally bigger than spontaneous world peace, but still, it’s a possibility, and a meaningful one. It’s exciting, all the things we’re doing: Ronald Krabben is championing a project that will help shorten the time it takes for ALS drugs to get to market. Myriam and Ron are getting involved in the largest DNA research project on the planet – Project MinE, finding the cause of ALS. Zafer and Jan Willem are doing market research to find out how money flows in the world of ALS. Edde and Lucas will help a small starting company transform into a leading player in the world of ALS – with some help from Gib Bulloch this is bound to succeed. Put all this together and you get a disease that’s scared and sorry it has picked this particular guy to kill. We still need all the help we can get so please drop me a line if you’re curious. I promise you the most interesting and impactful role in your career if you’re brave enough to work with me on this.
 
On a personal note.
I’m doing well, symptoms are slowly progressing, mainly my voice deteriorating. I’ve lost the ability to whistle and I’m guessing that I will have speech for another 5-6 months, so you’ll see me around for at least that long (but it might just as well be more, or less). I’m not sure if/how I’ll continue work once I reach the Stephen Hawking-stage. Right now the biggest pain is being tired all the time. We should all sleep more and I do but it feels wrong – life is ticking away. I have much less energy and with the extra work that being a patient brings, and with the time I’m taking to create memories for my friends and family to remember me by (actually, spending time with a small clone of yourself (some people call such a thing a “nephew”) isn’t as horrific as I feared it to be), I barely get to spend about 20 hours a week on what I now consider work. Luckily I spend each and every waking minute enjoying life as hard as I can.
 
On interacting with me
In my first mail I asked you to treat me like a normal person. Or at least, like you used to treat me. I have to say – you’re all doing fine so far, which is a big blessing. Thanks. I’ve been saying that last word so often and it’s still the only right one to use – thank you.
 
Cheers,
 

 

This one is pretty ugly… (but I wasn’t hired for my good looks anyway)

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(email to colleagues at work)
 
This is a long, serious and slightly personal email. If you know me, have worked with me or expect to work with me in the future (so essentially, if you receive this e-mail), please take careful time to read it properly.
 
A few months ago, I started noticing a small speech impairment. More recently, I started to notice a slight decrease of power in my right hand. Nothing serious, but I did decide to go and see my doctor. She referred me to a neurologist, who did a battery of tests; that neurologist referred me to two other neurologists. To make a long story short, and I’m sorry that I can’t find the best way to bring this news gently, today I got a confirmed diagnosis: I have ALS. If you don’t know what that means, I recommend you to read THIS link. I’ll sum it up for you in three lines: The connection between my brain and my muscles will slowly get worse. Right now there is no known cure and it always results in death. About 50% of patients that receive this diagnosis live another 3 years. A very small portion of patients live past 10 years. Meaning: I’m sick but I’ll be around for a while, at least.
 
As diseases go, there aren’t really that many that are more ugly, but the way I look at it, things could be a lot worse. There are so many ways to die, all of us do at one point, this way it’s just a bit earlier than expected and a bit more in-your-face than perhaps I’d like, but hey. An average expectancy of three years isn’t too bad; I could be run over by a car or get shot by an angry customer any average day. I’ve already done enough living in the past 36 years to put your average 90-year old to shame. I’m likely to keep all my cognitive abilities throughout, I’ve got a good going-in position (I’m young, otherwise healthy, strong, etc) and so far the process has been guided by extremely professional and compassionate care-takers. The support of my wife, friends and colleagues who knew about the suspected diagnosis are heart-warming (and needed). There’s clinical trials and research that may lead to a cure yet in my lifetime, and if not, eventually we’ll kick this just like we (mostly) kicked other ugly diseases.
 
This is the point in the email where I explain how grateful I am to be working for a company like ours. I said this to my first project team and I will say it to all of you, from the bottom of my heart: it is truly an honor and a pleasure to work with people like yourselves on the type of projects that we do. In my career of four companies in 15 years, the happiest years have been the last three, since I joined this wonderful group of driven, creative, annoyingly pedantic know-it-all’s. And even though ALS has cured me of being addicted to working (no more 90-hour working weeks), I would like to continue doing which has given me so much pleasure and fulfillment over the past years: working on interesting projects with smart colleagues. Well, that and kitesurfing.
 
Now for the bad news. I’m the one with the disease, but all of you are going to be affected by it in some small part. Don’t worry – it is NOT contagious, the chances that you will get it are pretty much zero (occurrence is 1 in 100.000, with 80% of patients over 50 years of age before they get it; I won a real nice lottery with this one so you don’t have to). But you will see me around the office or with projects and that may be confrontational. I don’t know yet what the outlook is going to be, if and how we’ll make this work in terms of doing regular work and for how long I’ll be able to continue, but at the very least, I’ll be back (spoken in the voice of Arnold Schwarzenegger), so you’re not rid of me just yet.
 
Action required on your end? Well, for starters, you’re going to keep on treating me like a normal colleague. Just because I speak a bit slower and can’t win with arm-wrestling anymore doesn’t mean I’m any less able to outsmart you (and I will). You’re welcome to approach me with questions about this (preferably once I’m back in the office) or to completely ignore it altogether if that works better for you. For the next few weeks I’m out of office, figuring out how to deal with this “change of plans”, but like I said: I will be back, given the limits of what will be possible and desirable for all of us.
 
See you all soon, take care, and be grateful if you’re healthy,
 
Garmt