Proceed spendings Tour du ALS
ALS is still a fatal disease with patients having an average life expectancy of 3 to 5 years after the first symptoms. The exact cause of the disease is not yet known and there are no drugs that can stop nor cure the disease. That is why intensive scientific research is needed into the cause of ALS. Money is needed for this life-saving research, a lot of money.
Leonard van den Berg, neurologist at UMC Utrecht and coordinator of the ALS Center, talks about the progress of research into ALS, PSMA and PLS in the video below. What are the goals? How is the investigation going? What has been achieved so far?
With Tour du ALS we contribute to a solution. Recent years, for over 10 million euros have been collected during the Tour du ALS in the fight against ALS. The donation money goes to research into ALS and to the care and quality of life of current patients.
Expenditure Tour du ALS
The proceeds of Tour du ALS are spent as follows:
- 50% is spent on European research initiative TRICALS
- 25% is spent on care projects that respond to care and quality of life of current ALS patients
- 25% is spent on general projects, with both a care and a cure goal
TRICALS is the largest European research initiative committed to a world without ALS. In recent years it has become clear that ALS is not a single disease, but a collection of subtypes that all lead to the same symptoms. A specific therapy may need to be developed and tested for each subtype.
In addition, it appears that - given the complexity of the disease - international cooperation is necessary. That is why the ALS Center Netherlands, together with ALS centers from Ireland, England, Belgium, France, Spain, Italy and Australia, has started a new and unique initiative: the 'Treatment Research Initiative to Cure ALS', or TRICALS.
TRICALS' goal is simple, yet ambitious: to provide every ALS patient with the opportunity to participate in high-quality therapy trials that advance scientific knowledge of the disease and identify better, more effective treatments for ALS.
ALS experts, ALS patient associations and ALS foundations from no less than fourteen different countries work together within TRICALS. The video below explains exactly how they do it:
More information about TRICALS can be found here.
ALS on the road
One of the projects Tour du ALS contributed to is the ALS op de weg foundation. This foundation aims to improve the quality of life of ALS patients. The ALS op de weg foundation helps patients with resources such as adapted bicycles, chairs or theratrainers.
The ALS on the road foundation was founded by Bianca Weller. She lost her husband to ALS and therefore knows better than anyone how nice and important it is to be able to offer patients and their families tools and support.
More information about ALS on the road can be found here.
Donations by foreign participants
Over the years, various TRICALS countries have participated in Tour du ALS. The following applies to foreign participants: the acquired funds are transferred to the local ALS foundation in the country concerned. This local foundation spends 50% on TRICALS and 50% on other projects at its own discretion.
As of September 1, 2017, Tour du ALS is organized by Stichting ALS Netherlands and the event is included in the annual reports. The expenditures & annual reports of the past editions can be found at the bottom of this page. We will soon update the overview of annual reports.