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Summertime ALS Update

From: Garmt@Accenture

Sent: Wednesday, July 09, 2014 1:04 AM

To: People@Accenture

Subject: Summertime ALS Update

 

Good news everyone,

 

I’m still alive! If you don’t know me, in my case, that’s actually an achievement. I had wanted to subject-line this email “Partir, c’est mourir un peu”, but then you would get the wrong idea. I am not going anywhere. Of course, I am dying bit by bit, like that corniest of poems (in Dutch), but then again, so are all of you. Each project you finish, each toe nail that you clip and each thought you forget, pieces of us are left behind every day. So we don’t really die anyway, we are just being reborn slower then we die.

 

I’m pretty sure that paragraph won an award for most inappropriately faux-serious opening statement of any email you have ever read. Are you still with me? I was about to update you how we’re doing with kicking ALS in the balls. First of all, my official Accenture-approved business card now says just that: Garmt van Soest, kicking ALS in the balls. I notice as I dictate this that I talk a lot about myself; I should be focusing on making this not about me so much. So anyway, a few updates:

  • Cause. Project MinE is still going strong. We have additional sponsors; Mr. Van Rompuy, for instance (Accenture had nothing to do with this, I just think it is a cool achievement). The Accenture team, led by Michael Teichmann, is getting ready for the next phase: design, after successfully reviewing several technology vendors, together with the UMCU.

  • Care. Project Xavier is past the prototype stage. 2 weeks from now, you will see a big press release, so I won’t say too much further.Another Care initiative that we are starting is improving existing eye tracking solutions. It’s not as Sci-fi as Xavier, but we should be able to revolutionize an industry J Justyna Tarwid is leading the effort to create a low cost eye-tracking solution by helping the development of Click2Speak and integrate it with Eyetribe. Coders wanted – I think c++! Apply with me or Justyna.

  • Connect. The TRICALS platform has gone live! Another Connect initiative is to provide the ALS-fighting community within Accenture with a place to connect and collaborate. We have so many ALS initiatives that no one has the full picture – we have a document that lists most of them; click here to see it: ALS_Initiatives_Overview_20140709_External

  • Cure. Treeway is still going strong; in addition to this, Elmer Spruijt is coaching another startup working on ALS drugs.

  • Capital. Major progress here! The fund now has a name: Qurit Alliance! Check out the website: www.qurit.org; you can also find a recap of the investor day there. Best news of all: we have our first investor!! Right now, we have a fund creation specialist working with us to recruit and select the investment team that will ultimately run the fund. Our Accenture network has already delivered one successful candidate; if you know (people in) the world of private equity, please contact ralph.staal@accenture.com for a description of what we are looking for.

 

I will keep it short today, the guy who is typing this for me wants to go home. I have to warn you, this ALS thing is a productivity killer. Just the doctor visits alone: there’s the speech therapist and the neurologist, the physical therapist and the psychologist, the “revalidatie-arts” and the “dietist”,  the ergonomics therapist and the guy at our local council who is supposed to give me a disability parking card who hasn’t returned the past 27 calls, the lung doctor and the recurring MRI appointments and of course the placebo, I mean, the experimental medicine that is not doing anything so far, but which makes you stay a day in the hospital every two weeks. I feel like Humpty Dumpty; all the kings men… In January I sent more than 1066 emails; nowadays I’m happy if I get to 25 a week. Adapting to it is getting more and more of a struggle. I always tried to keep every single little promise; I’ve had to learn not to say “I will send you that tonight” or “I promise I get back on that next week” as I simply couldn’t keep my commitments anymore. That sucks, I still get so many offers for help, but I just can’t tie it together anymore. For everyone who is waiting for a reply: I’m genuinely sorry. I wish I could live up to my promise to ruin your nights and weekends with ALS fighting work 🙂

 

Geez, did you notice that? That almost sounded like I was starting to complain! Let’s see, what would a sage like Crocodile Dundee say? “No worries”, of course. You'll still see me around the office, come have a coffee with me. I’m still involved in the projects; even if it’s just a day per week. For the rest of the time, if only something exciting and life-changing could pop up that would radically change the way I experience life. Oh, wait… that’s actually on the agenda for….. 14 days from now! I gotta go, I have to practice not sleeping and panicking over the temperature of a bottle of milk!

 

Cheers all,

(a beer on me for those of you who got the futurama reference)


Garmt van Soest
Senior Manager
Accenture Strategy
Kicking ALS in the balls”

 

 

This is the link to the powerpoint that was attached to the e-mail:

ALS_Initiatives_Overview_20140709_External

1 reply
  1. Barbara
    Barbara says:

    Beste Garmt,

     

    Inderdaad is het zo dat we allemaal iedere dag een beetje sterven. Ik volg je updates en met bewondering, de rauwheid geen bullshit maar realiteit maken dat ik toch regelmatig kijk of je nog iets geschreven hebt.  Dat heb je en dank je wel. Door jou verhaal en je updates besef ik des te meer hoe waardevol het leven is en de enige zekerheid die ik heb is dat ik ook dood zal gaan. 

    Het maakt het kijken naar het leven mooi en ondanks jouw pijn verdriet en het besef dat de dood op de loer ligt blijf je een optimist.

    ik volg je.

     

     

    Reply

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