For the first time in Belgium, a private partner and an academic research institution have established a fund for research into a disease. Through their Ruelens-Van Gorp Foundation for Dystonia Research (FDR), the Belgian fashion designer Lieve Van Gorp and Greet Ruelens have donated 1 million euro to neurologist Bart De Strooper of VIB-K.U.Leuven to conduct research into the neurological disorder dystonia.
Dystonia is a brain disorder that disrupts the normal functioning of the muscles. It affects approximately 10 000 patients in Belgium. In addition to the 1 million euro from the Ruelens-Van Gorp Foundation, VIB is also contributing 1 million euro to the initiative. This amounts to a total budget of 2 million euro, enough to launch a research group that will operate for at least five years.
“Although dystonia occurs relatively frequently, little research is conducted into the disorder,” Bart De Strooper of the Flemish Institute for Biotechnology (VIB) and K.U.Leuven says. “The new research group will focus on clarifying the causes of the disease. This is intended to lead to an improvement of the quality of life of dystonia patients.”
Dystonia: an unknown, but widespread neurological disorder
Dystonia is a disorder of the brain that results in the patients’ inability to control their muscles normally. Muscle contractions result in abnormal postures and movements. Occasionally, patients also suffer from sudden movements or trembling, or their heads are involuntarily tugged to one side, as though someone were pulling it with a rope.
Dystonia can occur in one, several or all the muscle groups of the body. There are many different forms of the disorder, and it is sometimes combined with other neurological abnormalities. It affects approximately 10 000 Belgians, a figure comparable to the number of Multiple Sclerosis patients.
The FDR wants to provide new perspectives for dystonia patients
The Belgian fashion designer Lieve Van Gorp and Greet Ruelens have been committed to combating dystonia for many years.
Greet Ruelens: ‘I was told I had dystonia six years ago, after a long, 4-year search for a diagnosis. Lieve and I founded the “Ruelens-Van Gorp Foundation for Dystonia Research” to promote scientific research into dystonia. After all, fundamental research is the starting point in our endeavour to find better treatments and hopefully also a cure for this devastating disease.’
Lieve Van Gorp: ‘The choice of Bart De Strooper was essential. When we spoke to him about our objective, we immediately felt as though we were on the same wavelength. And his passion for his field appealed to us enormously.’
Sources: Katholieke Universiteit Leuven, AlphaGalileo Foundation