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."

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hey Brother

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So this one guy, it was at the crew camping of Lowlands in, what, '10? '11?, I think my BMW was the only car there less than 10 years old. This guy, dishwasher extraordinaire, he knew so much about music, blogs of one particular kind of soul music that I had never heard of, he was stoned all day, had been up all night washing those dishes and now we were sharing the morning sun, me with a pre-hangover, he with a post-hangover. Always such a sad look in his eyes, his girlfriend died and since then life was just a place to hang around for him, I hope Iris doesn't suffer that fate… so blissfully unaware we were then. She (Iris) was already cooking and serving for 800 security guards that day and doesn't this sound like a Tom Waits song already, but that's not the point. The point was, this guy claimed Paul Kalkbrenner, you remember, from that endless summer feelgood hit "Sun & Sand", that Paul Kalkbrenner comes from a long and distinguished family of composers and should be considered a musical genius. Paul Kalkbrenner, a cheap nothing no content trancetechnodance (I don't know which brand of electronics goes with unt unt unt iik), a musical genius? Yeah rite. He's just like Avicii. Whom I also never thought much of until I heard the song my sister Reneke sent along with her guest blog. Avicii is a musical genius and he writes excellent lyrics. Ladies and gentlemen, I present to you, the first Guest Appearance on this blog: Reneke van Soest-Tompkins.

 

 

(so in case that was too cryptic, anything that follows in this post was written by my sister Reneke)

I’m shuffling through the maze my house becomes in the pitch black of the night, looking for the bathroom, when I realise it’s after midnight. It’s my birthday. My 40th birthday. Any sane person would think of parties, presents, those grey hairs – I think of Garmt. My brother Garmt, who looks so much like me, who understands so much of my world, who may never see his own 40th birthday. My “sister” Iris, with the ductile strength of willow, the courage to create life, who radiates love. All I would like to give them is time, together. When I came to Holland to give them time I was expecting to do the things the Dutch don’t generally ask or offer – the dishes, the laundry, the groceries, the rubbish. As a country, the Dutch aren’t very practically helpful, really. Good at moral support, good at talking openly, definitely. Though some aren’t even doing that – turning away, not being able to cope with illness. The ultimate individualism, not realising that individuals are in a schroedingers box, and only add meaning to life when someone who cares opens the box. Anyway, I digress. The dishes, the laundry – well, how wrong was I! What I had to offer was two hands, what I walked away with was inspiration, of the epiphanic type. I’ve felt the need to let you all know what it is that G is doing – I suspect very few people know the totality of his fight. He won’t, as he’d consider it bragging. He’s not a bad bragger, but knows where the lines of social acceptance lie 🙂

 

So. G makes the locally near-infamous “think big” looks like detail managers. Despite confronting a death that is comparable to being buried alive in your own body, he took a few steps back and looked at ALS. And again. First, he needed the right treatment; two weeks of frantic googling with six colleagues and friends brought to light every single trial and drug in the pipeline in the world. Then, he needed a place to store and share that; Ivo created a wiki, that is a comprehensive overview of causes, treatments and hypotheses around ALS. I’d conservatively estimate that the input to the wiki cost about 800 man-hours. Started thinking about a dashboard, a way to keep up to speed with worldwide developments on the ALS front. Speeched for the partners of Accenture to rally them. The first partner started talking to the professor about connecting researchers by inventing or implementing ways of making data sharing between patients, doctors and researchers better, with the aim to get clinical trials happening faster.

 

Then, he tackled the cause of ALS. Within weeks, he had found likeminded fighting spirits, and started having input in and support for Project Mine, where genome data will likely find new areas of investigation to find the cause of ALS. Tagging onto that Ivo started building a visualisation model in his spare time – think mind-map, but one that shows exactly what we know and don’t know about ALS, which shows all researchers exactly where their detail fits in. With info, cause and connections to speed things up covered, G turned his attention to a cure. First, with a few friends who dug into the details and papers to create a hypothesis about the cause, trigger and progression of ALS. Then, by jumping onto the bandwagon of Treeway, a company that invests in a unique way of finding a control or cure for ALS. But why stop at one company if you can call ten into existence with the right combination of business sense and academia? It’s attracted approval from people who’ve been managing billions – and better still, they’ll be running their first set of drug trials soon. And then there's the project with the electronics giant, and the attention-grab of Richard Branson, and… Finally, to ensure he had everything covered, he organised a workshop for a small army of MBA graduates to tackle ALS as a business problem. While his motor neurons were dying at terrible speed, he energetically and charismatically covered information sharing, finding a cause, finding a cure and speeding up the finding of either. Even if he really retired now, he still would leave an unprecedented legacy. For someone to fight like this, to spread wings around ALS in totality and make it fly, that to me is truly inspirational.

 

Don’t get me wrong, my bro is no saint. Believe me, I know – some things are hard to forgive, even if bigger people have already done so, even if they’re understandable. Also, for some of the big projects (Project Mine, Treeway) he’s "just" jumped on a train that Bernard and Robbert-Jan had already put on the rails. And of course, the fight means he isn’t spending enough time on things that are also important. But he’s doing it consciously, with deep deep feelings, and as far as fights-for-life go, this is EPIC.

 

He struggles to claim any sense of ownership of it – he isn’t doing that much of the work, really. Does the all-weather superglue of the spiderweb claim ownership of the web? Yet without it, it’d be a bunch of free-flowing or tangled up wires. He’s the connector, the catalyst. Maybe the short burning push of the Apollo rocket, allowing a man to stand on the moon over 4 days later. And, no I won’t put in links to that seedy man-on-the-moon or yucky he’s-my-inspiration song, despite this blog heading for a disastrous lowlight in the number of song references. But I do have a song reference for you. After dropping my boys off at school, I sat in the car in traffic listening to bad romance song after bad romance song. Family is so important, especially when you get ill or grow old (they already know you in nappies) – yet it’s not cool, especially in the individualism society – so I sat cursing the fact that nobody is making songs about familial love, as opposed to gang love or sex-based love or power struggles of all sorts and varieties. Then, with karmic timing, a song came on. It may not be the intense musical high-stand of Hallelujah, but it was so right for the situation, it touched me. I couldn’t see the road anymore and pulled over.This one, G and I, is for you, my brother and sister.

 

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!

She likes to move

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People ask me how come I don't write about Iris so much anymore? Well, that's simple. Like the christian god, I'm jealous, so I want to keep her all to myself. ALL FOR ME MUHAHAHA!

 

Well, that, and that I have two diseases (note – not the flu). But let me tell you about the best moment of 2014. It's a bit cliche but it's true.

 

Nekplooimeting. Yes, fuck you, Google Translate, nekplooimeting. I'm not even going to try. I think it boils down to: ultrasonography. We went there for our fourth one, and you know, if you've seen one, you've seen 'em all. Is what you think for the first 25 seconds. And then your… child… pops… up… on…. thescreen. WTF. I'm in love. With pixels. I haven't been in love with pixels since I first managed to execute '10 print "hello" 20 goto 10'. I'm in love. The pixels move and the kid is, what's (s)he doing, jumping? Now (s)he's eating? The thing is 13 weeks old and already has a stomach and a bladder? It's scratching its head? Or is it mimicking holding a smartphone to its ear?

 

Then – dig this. The outline of the womb is clearly visible. Blood vessels surround it; some of the bigger ones expand and shrink by the heartbeat of Iris. At some points this has the effect of the womb denting in and out in a tiny spot on the rythm or her heartbeat. The baby is just 6.5 cm long but it's smart enough to find that spot and lay its head against it. Its head rocks on the beat of Iris' heart whilke we see its own heart beating, twice as fast, on the same screen. Baby lays its head there and rocks. Is rocked. His head is rocked by Iris heartbeat.

 

(I didn't want to send out this update. I'm usually content with how I describe with what's going on inside of me. This time it feels like nothing does justice to what's going on inside of me when I remember that picture, his/her head rocking. And at the same time, it's nothing special, people get kids every day, and then, this one is just pixels, and black and white at that, I mean c'mon, CGA has four colors and was invented in '81, what are we talking about here. Well. The untalkable apparently. Here's how I tried anyway)

 

To say "that rocks" is to make a joke of the images that stay with me, every day and every night, each time something else becomes impossible, each button I can't open or tie I can't tie or bag I can't carry, in bed at night as the memories of the day join up to gang up on me and drag me away from the now. Then I see the baby rocking its head and the belly of Iris can drag me right back to the here. I'm not afraid of anything here next to her. Just afraid that I want too much – I want to be a good father and a super husband and in the time left I wouldn't mind kicking ALS in the balls. In times of stress I revert back to my default behavior, though, and I grew up learning that you spend the least time with the people that are the most important to you, and I try to unlearn that every day, but it's so much easier to pitch our investment fund to a guy who should know this better than me but doesn't and that's why he listens to me and that's how we put another brick in the wall that'll capture this beast so we can kill it than it is to be home in time and be the person you think you'd like to be because if you can't even make your wife the happiest person in the world what business have you got laying a claim to parenthood? Ten points if you didn't have to reread that line.

 

Are you getting tired of hearing this? It's so silent lately. Like everyone's gotten used to it. Everything back to normal. Yeah, we've heard sappy parent stories before. I know. But seriously, I mean, today Iris' belly POPPED OUT. No joke. You could almost hear it. Up until 8.58AM this morning there was no visible sign of pregnancy anywhere on her (grey hairs on me but I digress) and at 08.59AM she comes up the stairs and says LOOK! And wtf she's looking like a pregnant woman all of a sudden. Seriously, even the most hardcore nerd out there should think that that's cool.

 

People, a public promise. As of July 1 I will go on 80% leave for at least two months. Why not 100%? Because I don't want to make Iris suffer the burden of having me around 24/7. But the rest of the time I want to be there and drink in every single second of Iris and our child like some of the big men that surround me showed how to do (Ivo, that's you).


 

DK7

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It feels like I met my killer this week.

 

Not ALS – we have been introduced earlier. But we both know that he's not a killer – he doesn't have the heart for it. That guy just weakens. And then he invites buddies like lung infection or something. And this morning I woke up with the flu, unable to breathe, barely able to suck air through a throat clenched shut by some muscle spasm, sweating all over from a high fever. So that will be my killer. The flu. I had it really seriously last year around the same time; ten days of extreme fever; I wonder if that was what triggered the onset. Anyway. The bottom line is: if my lungs are weak and I get what I have now it would probably be the end of me. It's kind of ironic; we're going to cure ALS but we don't even have a medicine for the flu?

 

So it's a week with a lot of crying. I've been playing tough guy long enough and I finally figured out I don't have to do that at home too. Thank god for Iris. My fellow patients prefer to focus on the positive so much that it seems like there's no room for grief. Call me sentimental, but I kind of feel like it's right to mourn the passing of my right biceps. I was at the gym the other week and try as the physical therapist might, even she couldn't suppress a "really?" when the biggest weight I could pull with my right arm turned out to be 5 kilograms. It's inspirational to keep upbeat and focus on the positive but for me there also needs to be room to sit down and realise that you are going to miss doing a push-up, or slapping Iris' butt, or carry groceries, like you'd miss a good friend when he's gone. I quite liked the use of that arm. I have one left, Iris' butt isn't safe from me slapping it yet, and there's no telling how it will progress, but it took that arm only 8 months to get to this point, so…

 

The ALS Honeymoon is getting to an end. The collective effort, love, help, support of everyone close launched me right into orbit – never have to work again, all the holiday you want, your DREAM JOB COME TRUE, we're becoming parents! Retail therapy on top – everything is new, laptop, phone, tablet, clothes, soon a house, "best restaurant in the world" yeah yeah yeah. And everyone is so nice to me! So nice! I wonder why? And then you read a blog from the husband of a colleague, who reached out to thank me for the work we're doing against ALS, because her husband died from it as well (you think this disease is rare? Incidence is 2 in 100,000, but that is _per year_, so turns out you actually have a 1 in 300 lifetime chance to die of ALS), and those blogs from patients always start at the end and then you read backwards, and yeah, going to the toilet using a crane isn't the most fun way to spend your day. That's why everybody's still being so nice, I guess.

 

Once you digest a diagnosis like this it's quite liberating. I have always put way too much stock in other people's opinion because I deemed them to be better than me at something or the other. Well, ALS got rid of that. No more static. No one can judge me now. No one can walk a mile in my shoes (well, except maybe B and RJ, which makes me quite sensitive to their opinion). It's amazing how much better your decisions get when you just listen to reason and emotion and not to some psychological complex. I highly recommend it. Or maybe ALS just gave a tiny push to years and years of hard-core zen training? 🙂

 

I wrote a happier update earlier this week that I'll send out tomorrow.