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:

  • My dad is walking in de Nijmeegse Vierdaagse for ALS. Sponsor him here.
  • Several of my friends are swimming the New Amsterdam City Swim, taking place 21/6/2015. Sponsor Lisanne or Antoinette!
  • The biggest genome research project known to date was started by two ALS patients in collaboration with one of the top experts in the field of ALS and is my biggest bet that we’ll find the cause. Once that is known we at least know what we’re shooting for. The project is http://www.projectmine.com/ and you can like it on Facebook too: https://www.facebook.com/MineMakeityours
  • Of course, the big constant factor is the Dutch Stichting ALS; they welcome your annual donation; small or big.

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.

If you need anything else or have any other suggestion, please drop a comment below and I’ll be happy to try and help you.

 

 

 

 

8 replies
  1. Jeltje van der Burgh
    Jeltje van der Burgh says:

    Indrukwekkend.

    Ik wil meezwemmen met de Amsterdam City Swim.

    (Wat moet ik daarvoor doen?)

    Jeltje (moeder van Kent)

    Reply
    • garmt
      garmt says:

      Hoi Jeltje! Wat gaaf dat je mee wilt doen 🙂 Ik breng je in contact met de moeder van Iris, die gaat een team voor de City Swim regelen!

      Reply
  2. Scott Hofmann
    Scott Hofmann says:

    Hello Garmit;

     

    I am a former hepatitis C researcher and I did a lot of studying on a form of ALS for a freind of mine that hits the lower body instead of the base of the brain. I researched the abstracts and found 3 major issues in ALS; they are [1] Unfolded Protein Response (UPR) in vertebral neurons not properly folding the protein Super Oxide Dismutase and [2] subsequent attack of an unidentified white bllod cell attacking with Super Oxide, probably a macrophage, overcoming the neurons defense and [3] disease treatment with ACTEMRA, in interleukin 6 inhibitor antibody used for Rheumatoid Arthritis can temporarily halt the diease progression. All 3 things I mentioned above can be defeated with different treatment strategies and mentioning ACTEMRA is a good start. The unfolded protein response is a major issue with Type 2 Diabetes, and being this is involved with HCV, I went to study that. A small molecular weight chapperone reversed the UPR and resolved the Diabetes in mice. The market drug that will do this is Phenylbutryic Acid sold as RAVICTI; please view http://www.ravicti.com for more info. Thirdly, the ineffective protein, Superoxide Dismutase, which could prevent neurons from dying from attacking white blood cells also has a low molecular weight surrogate called TEMPOL. Please contact me so I can show you what I learned because every problem has a solution

    Reply
  3. Dennis
    Dennis says:

    Garmt,

    Onlangs sprak ik AJ en vertelde hij e.a. over jouw situatie. Toevallig las ik recentelijk een artikel over een mogelijk positief effect van een stofje (palmitoylethanolamide) bij ALS. Dit kwam ik tegen omdat ik de literatuur over deze stof heb doorgepluisd in verband met een andere aandoening.
    De stof komt van nature voor in het lichaam en heeft ontstekingsremmende eigenschappen, en werkt met name op glia-cellen. Laatstgenoemde spelen een rol in bij ALS (zie bijv. ).

    Of dit echt iets is durf ik niet te zeggen, maar ik wil je dit ook niet onthouden. Mocht je interesse hebben neem dan even contact met me op.

    Groet,
    Dennis

    Reply
    • garmt
      garmt says:

      Hi Dennis, Thank you for the tip. I’ve been taking pea daily since about a month after the diagnosis. The efficacy for ALS is not proven or demonstrated though so it’s in the “let’s try this because it probably won’t hurt”-category.

      Reply
  4. Elle
    Elle says:

    Hi Garmt, 

    My friend Mieke sent me the link to your blog. You write beautifully – your posts are such a pleasure to read (I should be working) in spite of their fairly devastating subject matter. 
    I'll donate to the cause, just because your writing is that good. 😉 (Truth be told, I didn't know much about ALS until recently). 

    Sending you stranger-thoughts from afar. Congratulations on your (beautiful – aren't they all so beautiful?) daughter. 

    Elle.

    Reply

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