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Fighting ALS: Another update

03/05/2014/in English, Updates, Work /by garmt
——– 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
http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png 0 0 garmt http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png garmt2014-05-03 23:39:252014-05-03 23:39:25Fighting ALS: Another update
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EVEN WITH ALS

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Garmt van Soests first book. Part two will follow, later.

EVEN WITH ALS is the overhauled, revised, spellchecked collection of his blogposts. Furnished with more than a hundred footnotes, a foreword, epilogue and an extra appendix. Garmt curses, raves, fights, wins, sighs, cries, breaks, listens, sees, feels and shares. With powerful language and words that strike home, the book expertly punches you in the gut.

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Voor wie is het boek?

Het boek is uiteraard voor wie gewoonweg geen genoeg krijgt van zijn blog, maar ook voor hen die onder een steen geleefd hebben en pas net op de hoogte zijn van het feit dat er überhaupt zoiets bestaat als de blog van Garmt. Het is ook voor een ieder die inmiddels een muisarm heeft ontwikkeld van het vele doorklikken op de website en natuurlijk voor de vrienden van de oude stempel, die het ouderwets geil vinden om een potje aan ècht papier te snuffelen tijdens het lezen.

ALS DAN TOCH is voor iedereen die Garmt en de stichting ALS een warm hart toedraagt. Want uiteraard gaat de uitgeversopbrengst van het boek naar de stichting ALS. Vooruit, en de royalties gaan naar dochter Zoë. Dus je doet met het kopen van het boek niet alleen jezelf of je moeder een groot plezier, maar maakt tegelijkertijd de wereld een klein beetje mooier.

Win-win.

Zijn beschrijvingen zijn scherp. Geestig. En eerlijk.

Volkskrant

“...wrange humor en stoere vechtlust…”

Algemeen Dagblad

"Een boek waar alles inzit."

Jeroen Pauw

dadablblblblrrrr, die!!!!!??!

Zoe L. van Soest

Join the fight

Hello, dear reader. ALS is currently incurable, but I’ll be fucked if I’m taking this lying down. I’m also trying to be realistic about this, but still, a bit of a battle does a person good every now and then. The fight I’m fighting is summed up pretty neatly here in this video (februari 2014).

There are a few ways you can help out with a small donation:

232Km in 2016

Sponsor James Faust as he participates in 4 races in 4 countries to raise money toward research.

While I swim, bike, and run, you can show your support by donating.

Project Mine

The biggest genome research project known to date. My biggest bet that we’ll find the cause. Once that is known, we at least know what we’re shooting for.

Stichting ALS

Of course, the big constant factor is the Dutch Stichting ALS; they welcome your annual donation; small or big.

Your idea here?

Are you swimming, cooking, cycling or walking against als? do you know someone who is a millionaire and wants to make money? Mail to info@qurit.org or press the button.

Sponsor James Faust
Visit Project Mine
Visit Stichting ALS
Contact Me

My friend who’s really on top of the fight is Bernardus Muller and you can find him on https://twitter.com/BernardusMuller. His twitter feed is the best place to hear what’s going on with ALS. If anything can be done or if we or someone else have managed to achieve something, you’ll hear about it from him first.

Follow the latest updates on ALS

Who?

Garmt van Soest

Garmt van Soest is a versatile manager with a strong background in business strategy and technology. He has advised Fortune 500 companies in the US and Europe since 2000. Garmt joined Accenture in 2010 as a Senior Manager in Strategy where he has been leading engagements in different industries, solving complex problems, advising on strategic direction setting and leading organizational transformation programs. Since his diagnosis with ALS his full-time job is to fight this disease with everything he and Accenture can muster.

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