Department of Medical Genetics at Telemark Hospital is the home of Norway’s research program towards ALS and genetics, the GAIN study (Genetics of ALS in Norway). With links to all Norwegian ALS clinics, this study undertake research into clinical, genetic and molecular biology studies. Neurologists at ALS centres throughout Norway recruit individuals living with ALS into the study. The goal of the GAIN study is to increase our knowledge on the genetic aetiology of ALS in Norway, improve and increase the awareness of genetic diagnostic testing for ALS and facilitate inclusion of ALS patients into gene specific treatment trials. The GAIN study are partners in Project MinE, with the aim of including 1000 DNA samples from Norway.
Essential collaborators in the GAIN study and Norway’s Project MinE effort are two Norwegian ALS clinics with strong ALS research communities:
We would like to thank people with ALS and their families across the Norway for their participation in developing this important research resource.
The genetic analysis are funded by the patient organization ALS Norway, Telemark Hospital Trust and the South Eastern Norway Regional Health Authority
In Norway, we have an ambassador for Project MinE.
I have familial ALS. I was first diagnosed with Charcot-Marie-Tooth disease in 1995, but when my son started to develop symptoms, the neurologist meant that the diagnosis given to my mother, my brother and me was ALS. We have lived with this disease in the family for generations.
Today, I’m 71 years old and I have managed the diagnosis ok, although large physical functional impairment. I have invested a lot of my time engaging for a better life for people with functional impairment. I was four years in the municipality board and 12 years in the municipality council working for the rights of people with functional impairment. Furthermore, I have been involved in user-controlled personal assistance, which is a Norwegian arrangement for organising practical assistance and training for people with substantial long-term needs for personal assistance.
Project MinE research in Norway is performed by:
Senior Engineer and Clinical Laboratory Geneticists, Telemark Hospital
Project leader for the GAIN study.
Prof. Neurology, Akershus University Hospital, Norway
Prof. Neurology, Haukeland University Hospital, Norway
The fundraising for Project MinE is led by ALS Norway