Even WIth ALS
  • Home
  • Blog
    • Latest post
    • All posts
  • Book
  • Join the fight
  • Whowhatwhy
  • Search
  • Menu

Even With ALS

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

Blog

Garmts latest stories

Book

Made from paper. Tangible, flammable, wow!

Join the fight

Kick ALS in the balls, join!

Whowhatwhy

Who am I and all things miscellaneous

Do you have ALS yourself? Click here!

Latest post

I won’t complain

23/04/2014/in English, Updates /by garmt

Take note – it’s a SONG, not a promise. And it’s such a good and subtle song. Listen it. It’s got nothing to do with today’s post though.

A selection of moments from the previous weeks

We appeared on Pauw & Witteman (big late night show in NL). The table was full with RJ and Bernard and they get the story across just fine. Yes, I was a bit jealous not to sit there myself but serving my ego is not the purpose of our joint quest, so I was really happy to enjoy the experience and see that it helps MinE. See the interview here (in Dutch):

http://pauwenwitteman.vara.nl/media/313165

An email from the facilities desk. I’ve ordered new business cards with “Garmt van Soest – kicking ALS in the balls” and that does not conform to our policies. Compliance police! After three escalations we get to someone that can approve this exception. His worry: well, people might mistake ALS for Accenture Learning Solutions… So now I get business cards that say “Kicking ALS in the balls” with a small asterisk after ALS and fine print at the bottom explaining that ALS is a disease and that I am not kicking our own solution in the balls.

Sitting with Menko on our terrace, I wish, not for the first time, that we had a personal biographer – someone ought to capture our conversations for future generations to exegesise.

“The world is getting smaller. One small walk through the city and I have to stop for breath three times…”

“Actually, the world is getting bigger. Things that were close once are now a whole journey away.”

I smile and feel elated. I don’t mind travelling. I was afraid I would have seen the whole world by the time I’m 40 and just like this I learn there’s new discoveries waiting for me, everywhere, on the way from here to the supermarket, everything. Later that evening Menko puts on my socks with such gentle care, not better but so different than Iris. It’s nice to feel loved.

Today

I was just in a room with a guy who started the meeting by saying “I am responsible for managing 22 billion pounds of investments and wrote about 950 million in checks for charity last year”. My biggest check to charity ever was less than 0,0002% of that. Two other guys in that room are together responsible for nearly 500 published articles on ALS and the like – and I write a blog. And I felt perfectly at ease in this setting. After all, I got the meeting together (with lots of help, but still). Right now I am trying to open the yoghurt I bought for breakfast. It’s noon and I’ve been up for 8 hours. I can’t. I grin. I can call a world class meeting but I can’t open my yoghurt. I almost laugh out loud! Cackling, I finally manage to stab the thing open with my spoon and get most of the yoghurt in my mouth. I’m also dressed to kill so the contrast between clochard-like mad behavior and million dollar looks (who said I was modest) convinces the old lady next to me that I am a devil, if not THE devil.

Henrik replies to the previous post: Ik wil ook niet dat het al voorbij is, voor jou en voor mij, en dat is het ook nog niet, voor ons beiden niet. (I don’t want it to be over either, for you and for me, and it isn’t yet, for neither of us).

Today, I also tip over a glass of water all over me and my precious suit. Twice. In one day. In a plane. Both times.

The guy is… annoying, but he is a buyer. We shake hands after an hour of negotiations: our house is SOLD! Time for a beer! Iris did it!! She bought AND sold our house… while being pregnant and overworked. Man this woman is… something.

Some other bits and bobs

It’s a shame that I can’t share too much about what’s going on in the fight. It’s really, really, really cool though. Check out our latest thing: http://alsinvestorsday.org/. The short version: give me 10 million and 8 years from now I’ll give you 25 million back, ah, and also a medicine for ALS. Smaller investments are also welcome. Do you know anyone who is interested? Put them in touch so we can invite them to join us on May 19.

And finally, Juel told the story of our last supper and you can hear it here:

http://evenwithals.com/wp-content/uploads/2014/04/New-Recording-1.m4a
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 garmt2014-04-23 23:33:532014-04-23 23:33:53I won't complain
Page 38 of 66«‹3637383940›»

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!

This website was made possible in collaboration with:

Scorpius Webdevelopment
Unleash The Monkey webdesign
Linelle Deunk photography
Hester Doove photographer
Nowsales hosting services
© Copyright - AlsDanToch | Credits
Scroll to top