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Neil Dunford recently joined as a Trustee member for the BDFA this summer. His daughter, Yanna, has the CLN2 variant of Batten Disease. Yanna has been enrolled on the BioMarin Clinical Trial since September 2014, which she started in Rome. The family returned to England at the end of January 2016. Before diagnosis, Neil worked in retail banking for several years.

Since returning to London he has been developing a Befriending Network for parents with disabled children with Scope. Neil is interested in promoting this model within the BDFA, in order for parents to have a coherent structure of support from fellow parents within the Batten Disease community.


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