This is Jamie, whose nephew Alfie has CLN1 Batten Disease. Jamie’s family have been raising outstanding funds for the BDFA through participating in a range of events, including Jamie’s own creative ‘4x4x48’ challenge in which he ran 4 miles every 4 hours for 48 hours! Jamie kindly shared his inspiration for fundraising for the BDFA:
In terms of inspiration that is simple, it really is ‘All for Alfie’. But if I am honest, my sister Hattie and her husband David are the true inspiration, I genuinely can’t put into words the admiration I have for them both. Alfie and his two brothers Max and Leo are blessed to have such loving and dedicated parents.
Jamie, uncle of Alfie who has CLN1
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