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Even With ALS

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

Blog

Garmts latest stories

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Made from paper. Tangible, flammable, wow!

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Kick ALS in the balls, join!

Whowhatwhy

Who am I and all things miscellaneous

Do you have ALS yourself? Click here!

Latest post

Saturday morning

19/11/2013/in English, Updates /by garmt

Gaion is my 5-year old nephew from New Zealand. I'm sorry folks, it's not like I'm making these names up. "Gaion and Metis and Garmt go on a great wild adventure" sounds like "can I buy a vowel please". And as REM is as appropriate for the lad in the former post, Eels figures perfectly with this one, or at least the particular song Saturday Morning does – other than that he's more a "Metallica plays Shiny Happy People"-type of kid. I have yet to meet the stoic that can keep his cool in the vincinity of this tight-bundled ball of red-headed excitement. People say he's just like me but that's not true, he's such a pleasure to be around. Meeting a tiny version of yourself with Tompkins genes in the mix wasn't the horror I expected it to be at all and it's not like his level of activity is rubbing off on me at all, not at all no, he's just got me going at 1200 words per minute right now so if you can't make sense of what the hell is going on, all I can say is, join the club. That's what he does to you – turns your world inside out. Just 6 hours ago I was reading him a bedtime story. Go on, try to guess, what does a 5-year old kid wants to be read as a bedtime story? Wrong. Wrong. No. Wrong again. Stop guessing. It's Iris' brain poster. As he lies there on the mattress all snuggled up with his knuffel I read out the name of each and every cerebral artery and nerve and only when I'm completely and 100% done is he content to close his eyes and doze off in less than an instant. Now it's 04.15h and he kicks open the door and wrestles his way into our bed (this guy is the most aggressive sleeper I've ever seen) and then announces three hours later (which he spent blissfully sleeping while kicking Iris and me in the kidneys) that he's got exactly three aunts and it's time to start eating, now please. We make a kiwi milkshake and a banana milkshake for breakfast (which, when shaken properly, by the muscles of this guy, end up evenly covering the floor, kitchen, ceiling and walls – perfect!) and when we combine them they are hailed to be SUPER LEKKER! with more enthusiasm than I've ever had the energy for myself. We've produced about a gallon of milkshake of which after the beforementioned shaking about half is available for consumption. I see this guy, about a third of my size, prove science wrong, when he swallows down TWICE as much milkshake as me. We burp and look at each other and see the day spread out in front of us, more clean and fresh and open and peaceful than I've seen a day in a long time, and I ask him: what shall we do today, Gaion? Everything seems possible and every answer is perfect, in fact, this whole sleepover is just that.

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 garmt2013-11-19 22:44:342013-11-19 22:44:34Saturday morning
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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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