Understanding Batten Disease

Speaker topics at a Rotary meeting are wide and varied.  Often amusing, often thought provoking and often given by people who are dedicated to widening the understanding of issues that are close to their heart.

Our club has had the privilege of hearing from a lady who was passionate about the main neuro-degenerative disease affecting children in the UK that is called Batten Disease.

It causes an apparently healthy child to develop epilepsy, lose the ability to walk, talk, eat and see, before dying a premature death between the ages of 5 to 30 depending on the type of Batten Disease inherited.  It is thought that there are around 200 to 250 children and young adults living with Batten Disease in the UK. There is no cure!

However, an organisation exists that supports families who find themselves in this terrible situation. It is called The Batten Disease Family Association (BDFA).  They provide specialist support and information as well as funding research into understanding more about all types of Batten Disease in the search for potential therapies and ultimately a cure.

This disease is worldwide but for more information visit www.bdfa-uk.org.uk or call 07584 300086

They need our support!

About mikew

Retired from Royal Navy after 30 years before becoming a Resource (and later Deployment) Manager with DERA (now QinetiQ) and now retired for the second time! Interests include being a volunteer at the Kings Theatre Portsmouth (recently retired as Trustee Director). Church Warden at Holy Trinity Blendworth. Secretary of our Rotary Club's Community Service, Vocational and Youth Committee for 2012-14. Currently the Club's Secretary.


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