Lo scorso 6 dicembre le associazioni e i ricercatori sulla SLA che lavorano insieme al Progetto MinE hanno parlato dei […]
Partecipa anche tu e aiutaci a scoprire le basi genetiche della SLA. Avvia o sostieni un’iniziativa locale per raccogliere fondi. Progetto MinE: contribuisci anche tu!
The Neuromuscular Diseases Unit/ALS Center at the Kantonsspital St.Gallen is the major referral center for ALS patients in Switzerland. The dedicated team provides multidisciplinary holistic care for patients and caregivers and is also engaged in clinical research. Research projects include studies in neurophysiology, genetics, imaging, outcome measures and clinical trials. The center is committed to international collaborations and is therefore participating in Project MinE.
The Swiss ALS Foundation (Schweizerische ALS Stiftung) was founded in 2003 by a young ALS patient Dirk Henauer, who dedicated the last 2 years of his life to the establishment of the foundation. The main goal of the ALS foundation is to foster and support research in ALS. Furthermore the foundation aims to provide support to ALS patients and their relatives. Over the past 10 years the foundation has supported numerous research projects at various academic institutions in Switzerland. For Project MinE the ALS Foundation has already raised 40.000 euros.
In 2007, the ALS Association Switzerland (Verein ALS Schweiz, Association SLA Suisse, Associazione SLA Svizzera) was founded under the name of ALS-Vereinigung.ch. One of the founders was suffering from ALS himself and the other was the widowed wife of an ALS patient. Sadly, the founder suffering from ALS passed away in 2012.
The activities of the Swiss ALS Association focus on supporting and directly helping ALS patients and their relatives. We offer financial support if required, provide wheelchairs and other medical aid and accessories, assist and consult the persons affected by ALS as patients or as relatives throughout the illness. Among other projects, we organise an annual holiday camp in the Ticino, initiate visits by specially trained ALS nurses in the private environment of the affected patients and arrange regular meetings for patients and relatives. We were also strongly involved in the development of an easy to operate communications App. Furthermore, we organize ALS events in the German and French speaking parts of Switzerland and do our utmost to make ALS better known to a broad public.
A second pillar is the raising of funds for research purposes. In this context we concentrate solely on Project MinE.
The Neuromuscular Diseases Unit is partner with the Siwss ALS Foundation and the ALS Association Switzerland in Project MinE. The goal is to analyse 600 DNA samples.
La ricerca del Progetto MinE in Italia è a cura Neuromuscular Diseases Unit/ALS Center, Kantonsspital St.Gallen.
Prof. dr. Weber is founder of the ALS clinic in St. Gallen in 2006 and the ALS clinic at the University Hospital Basel and acting chief of all ALS research projects in St. Gallen and Basel.
He is a clinical researcher who has been involved in numerous ALS clinical trials as PI and advisory board member and has published numerous articles on ALS and neuromuscular diseases. The ALS clinic St.Gallen is part of an extensive European network of ALS research participating in several EU-funded projects. Markus is currently a member of the Executive committee of the European network for the cure of ALS (ENCALS).