‘A silent killer’, that's how patients and doctors describe Amyotrophic Lateral Sclerosis (ALS). It is a degenerative disease with an unknown cause, it appears suddenly and leads to weakening of muscles and eventually paralysis. More than half of affected patients die in less than three years after diagnosis.
The worldwide Ice Bucket Challenge (involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of the disease and encourage donations to research) instantly increased awareness of the condition tenfold. Moreover, that same IBC not only created a growing awareness of the severity and social impact of ALS, but also triggered a tsunami of research projects. Yet additional resources remain necessary because to this day there is still no therapy or medication to combat this rare disease.
Alain Verspecht, loyal member of Bearded Villains Belgium since 2018, has been suffering from this terrible disease since 2007, which is quite exceptional. Meanwhile, he is completely paralyzed up to his shoulders and is ventilated 24 hours a day. Talking as well as eating becomes more and more difficult.
“I admire him enormously for the way he feels like getting up every day. It helps that he still has goals in mind. For example, he is very committed to the ALS Fund Alain Verspecht, which we founded in 2013 at the Catholic University of Leuven (KUL) and which has already raised more than 850,000 euros for scientific research into ALS. My husband has no illusion that a cure will be found for him in time, but the idea that it will help others gives him great satisfaction.”
(Katrien Asselbergh, wife and caregiver of Alain)
What is ALS?
ALS stands for Amyotrophic Lateral Sclerosis and is a disorder of the motor nerve cells in the spinal cord and brainstem. When motor neurons die as a result of ALS, the brain loses the ability to control muscle movements. This leads to progressive loss of strength in the limbs, swallowing difficulties, speech impairment and breathing problems. The disease is usually rapidly progressive and fatal. ALS patients usually die as a result of respiratory insufficiency. The average disease duration is about three to five years.
In some countries, ALS is also called MND: motor (movement), neuron (nerve), disease (illness). In America, the condition is also known as the ‘Lou Gehrig disease’, after the name of the legendary Baseball player who succumbed to this disease in 1941.