Column January 2014

Why invest in research into ALS

The end of 2013 was busy and intense. There are more activities for charity in this period of peace and happiness, even at the ALS Liga. But this year the rush for action was due to Studio Brussel and Music for Life. It was different than before: there was no glass house anymore and there were hundreds of charities. Of course, the ALS Liga didn’t miss this opportunity. Studio Brussel achieved a large audience with this action and represents a huge media machine we like to use.

In fact this "hottest week 'of StuBru was for the ALS Liga a brilliant ending if a very active and productive year 2013. Of course, I am speaking primarily about the of funds raising for scientific research. The undersigned was present at the presentation of the check in the lab of Prof. Van Damme in the UZ Gasthuisberg. Evy Reviers represented the ALS Liga to give the check of just over 100,000 euros to prof. Van Damme. He was as delighted as surprised with the amount like we did. This year the donations from previous years didn’t increase, but multiplied by four or five. That means, in terms of market suitable terminology, an increase of 400%.

Such a returns you get nowhere. In fact, the banks don’t want our savings in these post modern times. They send us home with an interest rate of a little percent. Of which they even deduct their fixed costs, so there’s almost nothing left. You better do something meaningful with your money. Yes, you can always buy something, perhaps unnecessary electronics, that’s nice, just like in SF movies, or you could stabb your money in a black stocking as before ...

But this gives less benefit than the value you paid for it. In fact your savings reduce only. This is because what you’re getting for it, is less profitable than the depreciation of your money. If you realize that, it can still be a nice choice to search for more, to choose better, for a purpose, a solidarity gesture. Will you choose to do 'good' and just think beyond one usually still doing these days. One should perhaps do something to secure his soul to save, or to earn his "heaven"?

This choice and belief are personal. However, many people would agree that our own humanity, our humanity as human beings, exists just in that we have free will to do good. We can behave as social, intelligent beings. That means that we care for each other as a group. Of course some systems do exist already in our society, but there are empty places. Not all needs filled by the government. Yet those needs are urgent, yes even necessary. And right here you can as an individual make a difference by providing your support. You give money, but you get no money or object in return. You get something back in 'higher order': a very warm feeling because you participate in something good. You help people who really need your support. And ALS patients need your help, really need our help. Help for the here and now, in resources and assistance, but specially aid for scientific research. Science must make a great leap forward in order to treat this disease and even help out the world ..

It's good to know that no scientific research exists on its own. Disturbances in the nervous system or in our brains can cause a range of diseases and disorders that are all related. This goes from Alzheimer to MS and till even mental disorders such as autism and schizophrenia. The nervous system and the brains are incredibly complicated. That makes research difficult and complicated. That’s why science tries to analyze and study everything in small pieces. Here is the disease ALS very interesting because the symptoms are very extreme (breathing problems, paralysis). Because of that they’re good to observe and easier to measure. This gives us a better understanding of the functioning of the nervous system. To study a disabilitie as autism is much more difficult because the symptoms aren’t always visible to the patient or to measure. But in the future may be a breakthrough or understanding through research leading to new insights and perhaps for other breakthroughs in other nerve diseases.

That’s why I find de disease ALS so interesting. To me it feels like there’s 'music' in this study. I think the development of "something", a solution or an important insight, is not so far away. That could even gives reaching impact. That's why I support this and therefore I believe that science gets into it.

I hope you can agree with me. I also hope that you will work together with me to change truly our world in the future. I don’t speak about a robot that can talk or can close curtains with a simple word. I'm talking about something much more important: our health, improving the quality of life, the cure of diseases. And I'm also especially about reducing the pain and suffering in the world.

I want you to thank already very much for your warm support, in the name of all patients with neurological or brain disorder or disease.

2013 really was a great year. We will make every effort to do even better in 2014, to go even further. It’s a constant battle to liberate every ALS patient from captivity in his body. Then only this mission will be accomplished, not a second sooner. There’s no time to lose, I choose the Greenpeace slogan of the '80s: "No Time to Waste": don’t waste time. The concern for the environment has been improved already. Now we focus on other important social problems. I chose, "I choose you" ALS.

Tristan Herftijd

Liberation Park, January 2014