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Even With ALS

Garmt was experiencing ALS – so you don’t have to!

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Update from a malfunctioning consultant

27/11/2013/in English, Work /by garmt
——– 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,
 
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 garmt2013-11-27 21:39:322013-11-27 21:39:32Update from a malfunctioning consultant
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Click to buy!

So here’s the book:

EVEN WITH ALS

(yes it’s all caps!)

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.

So get a move on. With a few simple clicks of a button, a piece of cake for those without ALS, the brand-new book will be making eyes at you from your mailbox in no time.

Convinced? Click here to buy it
Not a fan of paper? Read it all online, here!
I have the book, show me the extra content already.

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.

Do you have ALS yourself? Click here!

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