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Even With ALS

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

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Made from paper. Tangible, flammable, wow!

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Do you have ALS yourself? Click here!

Latest post

If it makes you happy…

17/10/2013/1 Comment/in English, Updates /by garmt
I called up someone important in the field of ALS research. I wanted to understand what he was doing and to see how I could offer him help. Zeef, from Israel, who works for IBM, approached me; he had heard about my story and is active in the same field as this guy. I naively thought that calling the ALS researcher to connect the two guys was a good idea. However. The ALS researcher wasn’t too happy to hear me call. He told me he has enough people offering him help, that he doesn’t have time for me and that I please go through his secretary. And that hurts. It does. It touches a sore spot deep inside me that’s still just a tad vulnerable – I haven’t yet fully recovered from the news, it seems. It tells me: you are not useful to me. I hear: You are of no value. I feel worthless. Yeah, I know that that’s my problem, and that he didn’t mean it that way, but it’s interesting to just watch that.
 
Over the years I grew a useful reflex to situations like these. I call it the “I’ll fucking show you motherfucking moron asshole idiot” reflex. I’ve learned to hide it a wry smile and say “the people who refuse my help are usually the ones who need it the most” (we Consultants are bred to show just a little bit of arrogance between ourselves). I’ve used it to motivate myself and built a pretty nice career with that. I just don’t have the time right now to go on a crusade or prove something to someone. So I care for my hurt and postpone this battle to another day.
 
Another day comes, actually, the next day. I get to speak to one of the real BIG leaders of Accenture; the person responsible for our development partnerships. I share my story and he responds in the most compassionate way. Then he puts that aside and says in his adoringly thick Scottish accent: You’ve got my sympathy, what else do you want? I opt for his advice and his connections. Within minutes of brainstorming this guy has it figured out: I’ll find out what the REAL problem is why ALS is not being fixed (Is it funding? Is it collaboration? Is it technology? What button should be pushed to make a change? I’m a strategy guy, he says, I know how to build a team and do this, and he’s right) and I’ll write it up in a story and he’ll take me to the CEO of either the 2nd or 3rd biggest charity in the world (at #1 is, yes, Ikea) and that that #3 charity actually focuses on biomedical research? Isn't that appropriate? He can connect me to any other important person that I need to talk to. I’m not sure if I want to take this on (this is a SERIOUS piece of hard work we’re talking about), I don’t know if it is more use than just the project Accenture is doing with Leonard, I don’t even know if I have the energy and the time to do something serious, but… at least I don’t feel worthless. This time it just took me one day to go from being rejected by someone I haven’t even met to getting a road to walk so far over his head to reach what he cannot… my motivation may be petty, childish, mean, wrong, whatever, but if it works to keep me going, it works. Even if it is just planning and dreams for now (I’ve yet to make an actual contribution, I think) it may lead somewhere. So this a good place to start.
 
 
 
 
 
Attached also a speech that I gave to a different group of Accenture leaders here. Didn't want to send it out as text since this is the 2nd update this week already. If you'd like to read it it's right here at this link: Speech Strategy College 16102013
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 garmt2013-10-17 20:27:182013-10-17 20:27:18If it makes you happy...
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Full story

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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