Column December 2013

Liberation

It’s becoming that time of the year we first of all go back on the past year, two thousand thirteen. In all levels of society and in all media we find the lists of events and reports, the most remarquable moments, the funniest moments, the conflicts, violence, disaster and adversity, glory of victories in the sport, shortly, all the great and smaller headliners of the past year. I wanted therefore work with the headliners to start, but also with the little things too small to be interested or amazing to mention, but therefore no less important.

Of course I'm talking mainly about the affairs in and around the world of the ALS Association, the disease, the study, the patients, the events, the hits, the fun. But also the lesser moments of pain and sorrow always present, the constant flow of sweat and tears created bashing on that dike that ALS is, with smaller and larger hammers, even drills today, and hopefully soon with larger cranes and bulldozers.

It has been a busy year for the Association. I only joined the team somewhere this year the team, and have no direct comparison for basis, but the feeling tells me that the League has achieved and done certainly a lot more this year than she actually is for herself. Self transcending it’s called, and that's great, that's art. This has required great efforts with everyone involved, with all the accompanying stress and other ailments. But I think I can watch through the eyes of our Chairman Danny, for a moment, when I say that only the result counts really and that all the rest is secondary. I can perfectly endorse. Who really mean to do something important to help ALS out of the world must go beyond human limits and try to exceed what is essential. In the artistic milieu it’s called to throw himself. The League has also done it this year.

Without wanting to enumerate here and repeat a full list of events and press releases, are there for me personally nevertheless been some impressive moments. In the first place the opening of Middelpunt with Prince Laurent, then meeting the music group Toto in Forest National, the benefit of Mil Boeckx, Timmy and his family’s campaign, the rally for 3M fund just awarded with the great gift itself, three Belgian researchers in the field of ALS receiving international indication and prices, and then these days the Music For Life campaigns. In addition, many other Christmas markets, cheese nights, wine tastings, markets, flyers, lion delights and sales, football games, everything to contribute to the greater goal. I also want to mention here already our two heroes of the 4000 km because they’ve been very active in raising funds, but of course we still look forward to the actual event next Summer. I hope this become something unique with can count on the necessary attention, and respond incorrespondingly resources for research.

This all together makes a huge bill on fundings, I don’t even dare to estimate how much, and it's not up to me to do that, but the overall result this year is to my suspicion unseen in the history of the ALS Association and in the fight against ALS in Belgium tout court. That is certainly not the work of one man, not even one team, but of a whole network of sympathizers who have helped them shaken up others. For this you all deserve equal respect from us.

I would of course also use this opportunity to Mia and Danny and Evy, which nevertheless the daily management and responsibility for all ALS activities, congratulate with their courage, persistence, work diligence and especially the still stunning result. You show with a lot of will and commitment and a clear objective find a way through the jungle where others prefer to go around it. It's been a tough year for everyone with extremely busy periods, but you’ve beaten you through it. Hopefully will bring the future some rest and relaxed time, sometimes needed to recharge the batteries, I'll wish you therefore for the coming year, and especially good health, because if we don’t know that's the most important thing, then who?

I would of course wish all readers and pALS a good health for the coming year, and let's continue to pull the same rope to get that heavy train going, that research may deliver its first results, and the first results are promising. For all sympathizers, understand that each year can be a crucial year for an ALS patient and his impatience speaks from an uncertainty and sometimes fear that every New Year's wish could be the last. Therefore there is no time to lose to throw yourself full on this train to join us in helping to collect more funding for research. Don’t do it for me, don’t do it for yourself, do it for the ALS patient who recently received his diagnosis and knows his time is ticking and estimated to be three to five years.

Tristan Herftijd

Liberation Park, December 2013