What happens to my donation?
We jump into the deep end for the ALS Foundation and try to raise as much money as possible with the Amsterdam City Swim. Every euro donation that you train and swim hard for goes 100% to the research into finding a cure for ALS and improving the quality of life and care of ALS patients.
The Dutch ALS Foundation funds projects that aim to find a cure for ALS as well as projects that improve the quality of care and life of existing ALS patients.
Research has shown that ALS cannot be seen as a single disease, but that there are several variants. This is one of the reasons why this disease and the search for a cure are so complex. International cooperation is needed to conduct targeted research into finding a solution using different approaches and with many researchers who approach the disease from different angles.
The Dutch ALS Foundation subsidises scientific research in the following focus areas:
- identifying different forms of ALS: this involves genetic research, epidemiological research, cognitive profiles, imaging characteristics and bio-marker development.
- investigating disease mechanisms to develop targeted therapies. This lays the foundation for trials with patients.
- conducting trials: the only way to find an effective treatment is to give the right drugs to the right patients. However, patient groups are getting smaller due to personalised medicine. Limited patient numbers make classical randomised drug trials difficult. For this reason, the ALS Centre, also internationally, has started several large projects to conduct as many trials as possible, as efficiently as possible. This uses promising drugs and with as few placebo users as possible. The most prominent initiative in this field is TRICALS, in which ALS research institutes from eight countries are collaborating.
The subsidised projects improving the quality of care and life of existing ALS patients always benefit the total patient population in the Netherlands.
75% cure, and 25% care
As much as 75% of the total donation amount is spent on scientific research projects into identifying the cause and finding a cure for ALS. The other 25% goes towards projects and initiatives aimed at improving the quality of care and life of the ALS patient.
Following advice from the Scientific Advisory Council (WAR), the Board of the Dutch ALS Foundation has approved several proposals. The proposals - both focused on cure and care - can be found here. More information to all current studies, can be found here.