Column May 2014

Probably you noticed already the visual pollution in your street, along major roads and at major intersections, where our politicians recommend themselves, pasted onto wooden panels hastily in recent weeks as mushroomed shots: the Elections . In the run up to the elections, the ALS Liga didn’t sat still and sought actively its own agenda, which is the same as that of any pALS, to place on the political map. With luck, I may still say, which witnessed a conference day at UZ Leuven Gasthuisberg where at the laboratories of prof. Van Damme prof. Robberecht gave a very interesting lecture for the invited politicians. He tried his excellent speech capabilities to dedicate the men and women politicians in ALS, the consequences for patients and family, and knew the importance of research into the disease placing ALS excellent. Evy Reviers then gave a presentation on the ALS Association and its operation, and explained the disease from the standpoint of the patient quite far. The gaps and deficiencies in the government support were hereby put on the agenda. Then the guests were allowed a tour of the laboratories with fish, mice and fruit flies as experimental animals / models enjoy to put in as a different and strength. This conférence was launched by the ALS Association in collaboration with prof. Van Damme. Also the fact that Danny as Chairman and as a patient was present has certainly made a very direct confrontation with the disease as possible.

Perhaps most known of the present politicians were Bruno Tobback, Peter Van Rompuy and Theo Francken, but also colleagues from other parties, and other regions, were certainly present. There was also, of course, plenty of time and space for discussion in the corridors and at a buffet during lunch to make attention on and to discuss a few things.

Some findings are quite remarkable. The Belgian federal government actually booked a budget of € 0.00 to provide for research into the disease ALS. That is to mention very poor. So all the research is based primarily on donations, sponsorship and money from abroad. Actually, this is essentially unacceptable for a society that also dare to call "social" to support a disease like this as easy and cheap. Also concerning tools and the problem of the border of 65 years is the fact that in a Kafkaesque "social welfare State" would be much better handled, or for long done. That the target might be very small, it plays no role in a Government actually. She has the duty to care for all citizens, the so-called Welfare State, and specifically and especially for those who are weakest herein. Well, where you waiting for?

Another finding is that in the Anglo-Saxon countries it seems much more comes from private donations, called philanthropy. This contrasts with our Belgian fellow man who globally also reflemcting on the right side and with American infuences and privatizes to present themselves as modern and as successful, which still seriously lacking this philanthropy. This disfigures really the style and good taste of those who are successful, they can’t make this gesture to make larger donations for charity. Apparently there is still somewhere the "Farmer Coenen" complex of the rich shamed petty Flemish one who can only see material gain, the yield of the crop as it were. It becomes time to change this, that one realizes how and with which the real difference can be made, and yes, even stroking his personal ego or put on the card. And that is by helping disadvantaged. Not help as to go around with the scale in church with some ringing and a half knots, no, with really serious donations which make a substantial difference to the investigation. There you can earn yourelves a good sleep and peace of mind, I can assure you, and the feeling of happiness that this effectively creates is contagious and will also arise in yourself. It is often said that happiness is not for sale. That is true, but do something voluntarily to help others is nothing commercials, like that you can find happiness in it. Maybe you understand that, now or later on your deathbed, or maybe some only later.

Apparently there’s some hope as famous people, top officials, would get the disease. Then it can be possible, then many opens their eyes.
Mostly when BV’s or high level people are affected by a serious, they start a fund or put more time into charity, or helping to 'promote' a disease.
This says a lot, and it is only by such examples of high levels who take the lead in philanthropy we can hope for change.

Would this philanthropy here get some spontaneous shape, we would also exhibit less tendency to arrange everything through governments and through political means ("we already pay enough taxes"). In that sense being social in this former European democracy is still an act of enforced social-being, that by law, tax reduction and other tricks, has to get started from a block of gray matter of minorities and vulnerable in society, which here still benefit. If one ignores the social aspect of a society, it is often forgotten that this also includes the community or state. And this is certainly not a political statement but a pure Newtonian law. Why the man behind the garbage truck would still pick up your garbage if you don’t respect him in the other direction and support?

I do not understand why people with too much money don’t donate more, set up foundations or help others financially. In the US they do that and indeed often and with really great resources. What does that excess money differently?
It leads to extravagance and a form of hyper-materialism where I just psychological offsetting huge gaps in other areas may suspect. My argument is clear, it’s pretty that who’s really successful also must show by being a social player, voluntary and personal. Only then a disease like ALS conquer through research, science research. Our confidence in science is indeed immense, why not invest more in there, because if it should depend on the government, everything goes too slow, and often lacks the commitment his goal. Eventually it concurs with what ALS patients also wish: medication. How, who or what makes them doesn’t matter. They are desperate, the clocking is ticking fast and grab any straw to try to save themselves. That straw can be yours but you must do something, not tomorrow, but now.

Tristan Herftijd

May 2014, Liberation Park

Translation: Marina