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How This CEO Became An Expert In Rare Disease, Almost Overnight.

Words by Harrison Read

Timothy Syndrome Alliance CEO, Sophie Muir, epitomises the word versatility.

From leading the research, finding others affected, generating funds and doing just about everything, Sophie is a prime example of how you can become an expert in your field 'almost overnight'.

Timothy Syndrome Alliance raises awareness for patients, families and carers around the world that are affected by the rare disease.

It was in 2016 that Sophie Muir, found out that her son, Calvin, had Timothy Syndrome – but she didn’t find the Facebook support group until early 2017.

Keen to find out more, Sophie and Calvin travelled to the USA in 2018 to attend the SADS (Sudden Arrhythmia Death Syndromes) Foundation Conference, where they met 5 other families who had been affected by the same condition.

Through sharing information and experiences, the TS community feels like a tight-knit family providing both advice and comfort to its members from all over the world.

Children with Timothy Syndrome desperately need early diagnosis, treatment and care.

Your contribution will help:

Raise awareness to drive research and clinical development

Enhance scientific understanding

reduce the isolation faced by families

With your help, treatment and a cure for future generations is closer to being found.

You can donate directly on the TSA website :)

This article aligns with the following UN SDGs