Michaela Damin, Founder and Chair, Barth Syndrome Trust

Michaela Damin is the chair and founder of the Barth Syndrome Trust. Barth syndrome is an extremely rare genetic condition affecting the heart, muscles, immune system and growth. Michaela’s eldest son, Nick, was diagnosed with Barth syndrome in 2002 and, although extremely unwell, was defying all odds by surviving. At that time, she knew of only two other boys in the UK with the same syndrome. Michaela set up the Barth Syndrome Trust in early 2004 and has managed to cajole and browbeat to make sure that her son, and everyone like him, is surrounded by an incredible team of experts who are working together to achieve some impressive results.

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