Talking Charities

Timothy Syndrome Alliance (TSA) - Part 1

16 min · 11. dec. 2024
episode Timothy Syndrome Alliance (TSA) - Part 1 cover

Beskrivelse

Sophie Muir, Founder, Chair and all-round Super Woman talks to Jo Edwards about Timothy Syndrome; what it is, how it affects the lives of children and their families, and why spreading awareness is crucial to improving diagnosis, treatment and care. TSA's vision is a world where shared knowledge and understanding lead to a cure for everyone with a CACNA1C genetic variant. Their mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders, including Timothy Syndrome and LongQT8, and to support the families and carers of those diagnosed. Charity website: www.timothysyndrome.org Recommended viewing: Connections video: Here [https://www.bing.com/videos/riverview/relatedvideo?q=timothy+sydrome+alliance+connections+video&mid=4F474A5659F35345CDA54F474A5659F35345CDA5&FORM=VIRE]

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episode Timothy Syndrome Alliance (TSA) - Part 1 cover

Timothy Syndrome Alliance (TSA) - Part 1

Sophie Muir, Founder, Chair and all-round Super Woman talks to Jo Edwards about Timothy Syndrome; what it is, how it affects the lives of children and their families, and why spreading awareness is crucial to improving diagnosis, treatment and care. TSA's vision is a world where shared knowledge and understanding lead to a cure for everyone with a CACNA1C genetic variant. Their mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders, including Timothy Syndrome and LongQT8, and to support the families and carers of those diagnosed. Charity website: www.timothysyndrome.org Recommended viewing: Connections video: Here [https://www.bing.com/videos/riverview/relatedvideo?q=timothy+sydrome+alliance+connections+video&mid=4F474A5659F35345CDA54F474A5659F35345CDA5&FORM=VIRE]

11. dec. 202416 min