ALS Dan Toch

So this one guy, it was at the crew camping of Lowlands in, what, '10? '11?, I think my BMW was the only car there less than 10 years old. This guy, dishwasher extraordinaire, he knew so much about music, blogs of one particular kind of soul music that I had never heard of, he was stoned all day, had been up all night washing those dishes and now we were sharing the morning sun, me with a pre-hangover, he with a post-hangover. Always such a sad look in his eyes, his girlfriend died and since then life was just a place to hang around for him, I hope Iris doesn't suffer that fate… so blissfully unaware we were then. She (Iris) was already cooking and serving for 800 security guards that day and doesn't this sound like a Tom Waits song already, but that's not the point. The point was, this guy claimed Paul Kalkbrenner, you remember, from that endless summer feelgood hit "Sun & Sand", that Paul Kalkbrenner comes from a long and distinguished family of composers and should be considered a musical genius. Paul Kalkbrenner, a cheap nothing no content trancetechnodance (I don't know which brand of electronics goes with unt unt unt iik), a musical genius? Yeah rite. He's just like Avicii. Whom I also never thought much of until I heard the song my sister Reneke sent along with her guest blog. Avicii is a musical genius and he writes excellent lyrics. Ladies and gentlemen, I present to you, the first Guest Appearance on this blog: Reneke van Soest-Tompkins.

(so in case that was too cryptic, anything that follows in this post was written by my sister Reneke)

I’m shuffling through the maze my house becomes in the pitch black of the night, looking for the bathroom, when I realise it’s after midnight. It’s my birthday. My 40th birthday. Any sane person would think of parties, presents, those grey hairs – I think of Garmt. My brother Garmt, who looks so much like me, who understands so much of my world, who may never see his own 40th birthday. My “sister” Iris, with the ductile strength of willow, the courage to create life, who radiates love. All I would like to give them is time, together. When I came to Holland to give them time I was expecting to do the things the Dutch don’t generally ask or offer – the dishes, the laundry, the groceries, the rubbish. As a country, the Dutch aren’t very practically helpful, really. Good at moral support, good at talking openly, definitely. Though some aren’t even doing that – turning away, not being able to cope with illness. The ultimate individualism, not realising that individuals are in a schroedingers box, and only add meaning to life when someone who cares opens the box. Anyway, I digress. The dishes, the laundry – well, how wrong was I! What I had to offer was two hands, what I walked away with was inspiration, of the epiphanic type. I’ve felt the need to let you all know what it is that G is doing – I suspect very few people know the totality of his fight. He won’t, as he’d consider it bragging. He’s not a bad bragger, but knows where the lines of social acceptance lie 🙂

So. G makes the locally near-infamous “think big” looks like detail managers. Despite confronting a death that is comparable to being buried alive in your own body, he took a few steps back and looked at ALS. And again. First, he needed the right treatment; two weeks of frantic googling with six colleagues and friends brought to light every single trial and drug in the pipeline in the world. Then, he needed a place to store and share that; Ivo created a wiki, that is a comprehensive overview of causes, treatments and hypotheses around ALS. I’d conservatively estimate that the input to the wiki cost about 800 man-hours. Started thinking about a dashboard, a way to keep up to speed with worldwide developments on the ALS front. Speeched for the partners of Accenture to rally them. The first partner started talking to the professor about connecting researchers by inventing or implementing ways of making data sharing between patients, doctors and researchers better, with the aim to get clinical trials happening faster.

Then, he tackled the cause of ALS. Within weeks, he had found likeminded fighting spirits, and started having input in and support for Project Mine, where genome data will likely find new areas of investigation to find the cause of ALS. Tagging onto that Ivo started building a visualisation model in his spare time – think mind-map, but one that shows exactly what we know and don’t know about ALS, which shows all researchers exactly where their detail fits in. With info, cause and connections to speed things up covered, G turned his attention to a cure. First, with a few friends who dug into the details and papers to create a hypothesis about the cause, trigger and progression of ALS. Then, by jumping onto the bandwagon of Treeway, a company that invests in a unique way of finding a control or cure for ALS. But why stop at one company if you can call ten into existence with the right combination of business sense and academia? It’s attracted approval from people who’ve been managing billions – and better still, they’ll be running their first set of drug trials soon. And then there's the project with the electronics giant, and the attention-grab of Richard Branson, and… Finally, to ensure he had everything covered, he organised a workshop for a small army of MBA graduates to tackle ALS as a business problem. While his motor neurons were dying at terrible speed, he energetically and charismatically covered information sharing, finding a cause, finding a cure and speeding up the finding of either. Even if he really retired now, he still would leave an unprecedented legacy. For someone to fight like this, to spread wings around ALS in totality and make it fly, that to me is truly inspirational.

Don’t get me wrong, my bro is no saint. Believe me, I know – some things are hard to forgive, even if bigger people have already done so, even if they’re understandable. Also, for some of the big projects (Project Mine, Treeway) he’s "just" jumped on a train that Bernard and Robbert-Jan had already put on the rails. And of course, the fight means he isn’t spending enough time on things that are also important. But he’s doing it consciously, with deep deep feelings, and as far as fights-for-life go, this is EPIC.

He struggles to claim any sense of ownership of it – he isn’t doing that much of the work, really. Does the all-weather superglue of the spiderweb claim ownership of the web? Yet without it, it’d be a bunch of free-flowing or tangled up wires. He’s the connector, the catalyst. Maybe the short burning push of the Apollo rocket, allowing a man to stand on the moon over 4 days later. And, no I won’t put in links to that seedy man-on-the-moon or yucky he’s-my-inspiration song, despite this blog heading for a disastrous lowlight in the number of song references. But I do have a song reference for you. After dropping my boys off at school, I sat in the car in traffic listening to bad romance song after bad romance song. Family is so important, especially when you get ill or grow old (they already know you in nappies) – yet it’s not cool, especially in the individualism society – so I sat cursing the fact that nobody is making songs about familial love, as opposed to gang love or sex-based love or power struggles of all sorts and varieties. Then, with karmic timing, a song came on. It may not be the intense musical high-stand of Hallelujah, but it was so right for the situation, it touched me. I couldn’t see the road anymore and pulled over.This one, G and I, is for you, my brother and sister.