Neurofibromatosis Awareness Day

Today there is a debate in Parliament in memory of Beth Beattie who had Neurofibromatosis (NF). She very sadly died last year just aged four and her parents, Eva and Roger, are helping to raise awareness of this condition.

NF is one of the world’s most common neuro-genetic conditions. There are more people with Neurofibromatosis in the UK than with Hereditary Muscular Dystrophy, Huntingdon’s Disease and Cystic Fibrosis combined and therefore, raising awareness is very important.

Half of those affected occur in families with no previous history of NF so they are unlikely to have heard of NF before diagnosis and will not know where to find help. Eva and Roger want this to change.

If you would like to find out more information on NF or you need some advice, I would encourage you to visit The Neuro Foundations website here.

Pictured Beth Beattie, who passed away on 4th November 2016, aged 4 years old, with her parents Eva & Roger.

Pictured Beth Beattie, who passed away on 4th November 2016, aged 4 years old,
with her parents Eva & Roger.

 

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