Neuro-SysMed Seminar – Ole-Bjørn Tysnes

Topic:  ALS

Speaker: Ole-Bjørn Tysnes

Title: «About ALS management and new emerging treatments” 

Place: The auditorium in Armauer Hansens Hus (campus Haukeland University Hospital, Bergen)

Time: Wednesday January 22, 2025, at 11:30–13:00 (lunch 11:30–12:00).

Registration: please use this link

Langage: English

Abstract: ALS is characterised by progressive paresis is in arms or legs, or it may start as slurred speech. Five to 10% of cases are familial ALS. The disease occurs with an incidence of 3 per 100,000 per year. The disease is usually rapidly progressive with a median survival of approximately 2-3 years. Ten per cent of the cases may live as long as 10 years.

ALS management has the goal to make the patient live at home during the entire disease. Consideration has to be taken towards the possibilities in their apartment/house. Other important issues are communication difficulties, oral secretion, nutrition, management of palsies and social security. Availability of aids and respiration problems are important issues to follow up. Symptoms develop gradually and ALS is managed by a team with various specialists. Successful ALS management will end up with palliative care at home. Taking care of spouse and family is very important in such cases.

Riluzole is the only accepted and registered medical treatment for ALS today. The effect is rather scarce. During the last few years possibilities of treatment of genetic subgroups of ALS have come up. Recently Tofersen is registered as treatment for SOD ALS in the EU. In Norway it is not yet registered. There is an ongoing trial on FUS ALS which is promising. Possibilities of treating genetic subgroups of ALS has induced a discussion whether all cases of ALS should be genetically tested. Genetic ALS is however quite rare in sporadic ALS, with exception of the C9orf expansion. Currently there is no available treatment for this subgroup over genetic ALS.