Spendings of the proceeds for Tour du ALS
ALS is still a deadly disease where patients after the sign of first symptoms have an average life expectancy of 3 to 5 years, the exact cause of the disease is still unknown, and there are no medications available yet. This results into intensive scientific research needed into the cause of ALS. Money is required for this life-saving research, a substantial amount of money.
Leonard van den Berg, neurologist at UMC Utrecht and coordinator of the ALS Centre, discusses the progress of research into ALS, PSMA, and PLS in the video below. What are the goals? How is the research proceeding? What has been achieved so far?
With Tour du ALS, we contribute to a solution. Over the past years, Tour du ALS has raised over 10 million euros in the fight against ALS. The donation funds support research related to ALS and also contribute to the care and quality of life of current patients.
Spendings of the Proceeds
The proceeds from Tour du ALS are allocated the following ways:
- 50% is allocated to the European research initiative TRICALS.
- 25% is allocated to care projects that focus on the well-being and quality of life of current ALS patients.
- 25% is allocated to general projects with both care and cure objectives.
TRICALS is the largest European research initiative dedicated to creating a world without ALS.
Over the past years, it has become clear that ALS is not just one disease, but a collection of subtypes that all lead to the same symptoms. There is a possibility that a specific therapy needs to be developed and tested for each subtype.
Furthermore, due to the complexity of the disease, international collaboration is essential. That's why the ALS Centre Netherlands, along with ALS centers from Ireland, England, Belgium, France, Spain, Italy, and Australia, initiated a new and unique effort: the 'Treatment Research Initiative to Cure ALS', or TRICALS.
The goal of TRICALS is simple, yet ambitious: to offer every ALS patient the opportunity to participate in high-quality therapy trials that enhance scientific understanding of the disease and identify better, more effective treatments for ALS.
Within TRICALS, ALS experts, ALS patient associations, and ALS foundations from as many as fourteen different countries collaborate. The video below provides a precise explanation of how they do this:
You can find more information about TRICALS here.
ALS op de weg
One of the projects that Tour du ALS has contributed to is the ALS on the Road Foundation.
This foundation aims to enhance the quality of life for ALS patients. The ALS on the Road Foundation assists patients with aids such as adapted bicycles, chairs, or therapy trainers.
The ALS on the Road Foundation was founded by Bianca Weller. She lost her husband to ALS and therefore understands better than anyone how valuable and important it is to provide patients and their families with tools and support.
You can find more information about ALS on the Road here.
Donations from International Participants
Throughout the years, several TRICALS countries participated in Tour du ALS. For international participants, the acquired funds are transferred to the local ALS foundation in their respective country. This local foundation allocates 50% to TRICALS and the remaining 50% for other projects according to their own judgement.
Starting from September 1, 2017, Tour du ALS is organised by the ALS Netherlands Foundation, therefore the event is included in the annual reports. The expenditures and annual reports of the past editions can be found at the bottom of this page. We will soon update the annual reports overview.