Renowned international researchers win Healey Center International Prize for Innovation in ALS
CEO of the ALS League and Chairwoman of EUpALS, Evy Reviers and Professor Philip Van Damme together with their colleagues win the Healy Center International Prize for Innovation in ALS for their Project MinE. This global prize recognizes excellence in research for a team whose efforts have catalyzed exceptional discoveries that have led to transformative progress in the development of therapy in ALS, and which together have had an impact on ALS.
The selection committee, consisting of clinicians and scientists, unanimously agreed that Project MinE is the most deserving recipient of the 2020 award. Project MinE is the largest project for sequencing the entire genome of a single disease in the world that has led to the discovery of several ALS genes. This initiative is the result of an international collaboration between patients, clinician-scientists and patient organizations. Importantly, the findings of Project MinE have revealed a new understanding of the genetics of ALS and the genes identified from this effort are currently and actively used in diagnostic testing, gene therapy and drug discovery in the field.
Project MinE is a vitally important project for all ALS patients worldwide. The findings may also provide insight into other diseases including neurological diseases such as Alzheimer's and Parkinson's disease, diabetes, and certain types of cancer.
The Project MinE team:
Professor Leonard van den Berg University Medical Center Utrecht
Professor Jan H Veldink University Medical Center Utrecht
Professor Ammar Al-Chalabi King's College London
Professor Orla Hardiman Trinity College Dublin
Professor John Landers University of Massachusetts Medical School
Professor Jonathan Glass Emory University,
Ms. Evy Reviers EuPALS, Belgium
Professor Phillip Van Damme University of Leuven, Belgium
ALS, ALS League and EUpALS
ALS or Amyotrophic Lateral Sclerosis is a deadly nerve muscle disease in which motor neurons die. You can best describe ALS as a disease that completely paralyzes your body from the neck down. You can no longer move, speak, swallow and breathe & become trapped in your own body. The mental and sensory faculties remain intact. Patients die an average of 33 months after diagnosis, with no hope of a cure. Worldwide, more than 400,000 people suffer from ALS: ALS affects about 6 to 7 people out of 100,000 and occurs all over the world. Most patients get ALS around the age of 60, but there are also teenagers with ALS. Men are affected slightly more frequently than women. In Belgium, 1,000 people suffer continuously from ALS. More than 200 patients die every year and at least as many are affected.
ALS League Belgium is a non-subsidized non-profit organization and tries to make the last years of life of patients as qualitative as possible, by assisting them and their relatives on a psychosocial and administrative level, lending aids for mobility and communication, standing up for their rights with the government, stimulating and financing scientific research through the fund A Cure for ALS and providing them with customized care / shelter.
In 2017 the ALS League founded EUpALS, the European Organization for Professionals and Patients with ALS. EUpALS unites the ALS associations from the European countries. The organization creates equal rights for all European pALS, a.o. by giving them better access to clinical trials with potential ALS drugs and informing them about them. Currently 21 ALS associations from 17 European countries are members of EUpALS.
Project MinE Belgium financed by the National Lottery (and its players), Flemish Government (IWT), ambassadors Simon Mignolet and Herman Van Rompuy and donations through the ALS League.