Scientists from the University of Oxford have set up ‘Families for the Treatment of Hereditary MND’ (FaTHoM), an initiative to bring together the community of families affected by inherited forms of MND. Their first meeting will take place in Oxford on Tuesday 18th April.
Most people living with MND cannot identify a relative who has also had the condition. However, around 5% of people with MND will have a family history of the disease, which is known as inherited or familial MND. This happens when a single faulty gene is passed down from parents to their children across number of generations.
The MND Association’s Director of Care (South), Karen Pearce, gives her thoughts on one of the clinical sessions on the first day of the Symposium.
I have just listened to four really inspiring presentations in the Holistic Care session – co-chairing with Jennifer Armstrong (Lois Insolia ALS Center – Northwestern University – Feinberg School of Medicine).
It struck me that so much of what we do is based on conversations, the ability to communicate in a sensitive way. The session highlighted how important it is for health professionals to have the skills to talk about very difficult issues early in the disease progression and to also work with the communication difficulties so many people with motor neurone disease (MND) experience.