ALS League Belgium, a patient organization helping the families of people with amyotrophic lateral sclerosis (ALS), raised €302,000 (euro) to stimulate and fund research into the life-threatening nerve muscle disease.
Three projects have been selected for support by ALS League Belgium this year, and details will be updated soon on the group’s website. The funds were distributed on Nov. 25 at the organization’s national secretariat in Leuven.
The €302,000 was raised with the initiative A Cure for ALS, which allows donors to define the particular project they want to support with their gift.
A Cure for ALS is a research fund that aims to support scientific research without deducting for administrative costs. Sponsors and donors get directly involved to make the process more targeted and transparent.
On the initiative’s website there are descriptions of each project’s intention, purpose, cost and specific expectations. Each project also has its own detailed webpage, with an embedded counter indicating the total amount of donations received at any point in time.
ALS League Belgium is a nonprofit, nonsubsidized organization that hopes to help ALS patients live more agreeable and easy lives by supporting patients and their families. The organization offers psychosocial and administrative help, equipment to improve mobility and communication, and contacts with governmental services to defend patients’ rights.
One of the services that the ALS League offers is the MaMuze fund, supporting initiatives to personalize care and to make participation in social life more pleasurable for people with ALS, like Middelpunt.
Middelpunt organizes annual meetings in ALS care centers to give ALS patients a full weekend on the beach where they can get a real sense of vacation without worries, just relaxation, recreation and enjoyment. This initiative aims to help those with ALS take a break from their daily struggles and enjoy the company of family and friends, breathing fresh coastal air.
These weekends are organized collaboratively with the League and other partners. The mini-vacations offer the possibility of participating in sports events, going on cultural trips, walking, cycling or sailing.
According to the press release, it is estimated that more than 450,000 people suffer from ALS worldwide, approximately seven in 100,000 people.