[ Een hart voor A.L.S ]

Een hart voor A.L.S. collects financial resources for scientific research. The driving forces behind this project are Alain and Katrien Verspecht. Duvel-Moortgat is delighted to support their initiative.

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Interview in De Bierkoerier, the Duvel Moortgat staff magazine (March 2015)
'Amyotrophic Lateral Sclerosis' is an incurable disease. The muscles gradually stop receiving impulses from the brain. This results in a loss of bodily functions, from walking to breathing. The non-profit association works with Professor Wim Robberecht of the Catholic University of Leuven, a world authority on research into ALS.

Alain Verspecht: “In 2000, together with my close friend Francis Adams, I started ‘The Concept Group’, an IT company specialising in the computerisation of wholesale and retail firms in various sectors. As COO, I was responsible for a team of about thirty people. It was a fascinating and challenging job, with a lot of social contacts and professional challenges.”

What were the first symptoms pointing to ALS?
Alain: “It started with muscle cramps in the fingers of my right hand, followed by a loss of strength. We didn’t really worry very much. We thought it was just a pinched nerve. But after a few visits to the doctor and some tests, our world collapsed. The news came as a real bombshell. Everything we’d achieved, and above all the peace we had finally found in our lives, suddenly meant nothing. The ALS diagnosis is an irreversible death sentence. The only uncertainty is how much time you have left. When we found out that as an ALS patient, you have an average lifespan of three to five years after the diagnosis, we just stared at one another aimlessly. One thing was sure: we would never give up the fight and we would enjoy every moment we are given together. Our weapons? Our love for one another, our family, and a warm and helpful circle of friends.”

Katrien: “Caring for my husband is a very intensive job. The nights are difficult because Alain can’t change position by himself. Our morning routine, when with the help of a nurse I take care of personal hygiene, feed and dress Alain, takes a great deal out of me.

Despite the help of family and friends, there are still all sorts of household chores to do. Because of Alain’s illness, we have had to make a lot of changes to the house: bathroom facilities, an office that we now use as a bedroom and wider doors inside. Buying aids to provide care requires an extra budget: electronic wheelchair, shower-toilet chair, breathing equipment, hoist, cough assistant (device that helps bring up mucus), adapted car with lift, adjustable bed, etc. Not to mention the fact that we also work together on my own further personal development.
 

 

 

 

In that respect, I’ll soon be starting Groovy Dogs, a web store specialising in dog food and accessories. In addition, I’m the secretary and treasurer of the non-profit association Een hart voor A.L.S., plus the stepmother of Julie (18) and Robbe (11). So it’s a busy schedule.”

What did the worldwide Ice Bucket Challenge mean for you?
“It was like a gift from heaven. The worldwide attention for the disorder exceeded the expectations of everyone involved in one way or another. Nevertheless, the awareness raising aspect of this fun action should be relativised. We now see that a lot of people associate ALS with the ice bucket action, but they have no idea what the disease involves and they can’t assess the social and economic aspects.”

What do you want to achieve with Een hart voor A.L.S.?
Alain: “Our non-profit association has a twofold aim: on the one hand, we want to increase awareness of ALS, and on the other we want to collect as much money as possible for scientific research.”

Where does your love of Duvel come from?
Alain: “In a strange way, Duvel has an important place in my life. You shouldn’t think of quantity, but of quality. For me, it’s the most refined beer in the world, clear and fresh, presented in a lovely, elegant glass. Many of the plans I made in the past, conversations that stay with me, unforgettable evenings with friends, often went hand in hand with one (or more) ice cold Duvel(s). Yes, I’m a fan!”
 

Bekijk hier de video die Bekende vlamingen maakten voor A.L.S

 

It started with muscle cramps. We didn’t really worry very much. But after a few visits to the doctor and some tests, our world collapsed
Alain Verspecht

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