FINALIST 2025
Ebony Samuda talks candidly about her own experience(s) of parenting, disability, superstitions, and the stigma that is attached to these subjects from both a British and Caribbean perspective.
Narrated by Francis Lovehall (A Thousand Blows, Small Axe) with an original score by Anil Tumkaya, it's both an entertaining and eye-opening account of the day-to-day of a parent with a child affected by Niemann-Pick disease type C.
We are dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases - a rare and devastating group of genetic conditions which affect both young children and adults. We raise much needed awareness, provide practical and emotional support, advice and information and facilitate research into potential therapies.
We are a small charity with less than five hundred members, and the work we do is funded entirely through fundraising activities and successful grant applications. Our strength, therefore, comes from the dedication of our much valued families, members, benefactors and volunteers who work with tremendous effort and loyalty in support of the charity.
We align with the following UN Sustainable Development Goals:
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