Hello my name is Logan (12 years old) and welcome to my page.

I am raising money for the National Prion Clinic (UCLH) by walking 50 miles throughout July and work towards getting my fundraising badge for scouts 

My great grandmother, my grandfather, great uncle and 2 great aunts have passed away from Gerstmann-Straussler-Scheinker disease (GSS)

My dad has a 50% chance of having the disease which also means my brother and I have a chance of inheriting the disease. 

This is an extremely rare, neurodegenerative brain disorder. It is almost always inherited and is found in only a few families around the world. Onset of the disease usually occurs between the ages of 35 and 55

There is no treatment for prion disease, you can help specific symptoms through medication, other therapies, trying out different caring strategies and adapting the environment.

The National Prion Clinic works closely with local teams to provide a clinical service for people with or suspected prion disease. The person affected will eventually become dependent on carers to carry out all activities of daily living. 

The following symptoms are commonly experienced.

BEHAVIOURAL SYMPTOMS

COMMUNICATION PROBLEMS

MEMORY/COGNITIVE DEFICITS 

MOVEMENT PROBLEMS

SWALLOWING PROBLEMS

VISUAL/PERCEPTUAL PROBLEMS

SEIZURES

I would like to do my bit to help raise money to find a cure. 

Thank you 😊 

(Wording helped by my mum)