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About TBCD Disorder

TBCD is a severe and unpredictable neurodegenerative disorder. The majority of those diagnosed will have symptoms present from birth. TBCD children experience early onset hypotonia (muscle weakness), epilepsy, global developmental delays and, in many cases, breathing & feeding difficulties.

Thanks to a genetic test (Trio Exome Sequencing) made available in January 2021, children with TBCD can now be diagnosed. The number of children identified with this rare and unfortunate disease continues to rise.

The heartbreaking truth is it's unlikely for any of the affected children to make it to their 5th birthday. 

The A Life For Leo Foundation seeks to lead the race to raise the funds required to support the development of treatments to save our children.

Our Mission

Our mission is to be the voice for patients, families and carers living with a TBCD disorder. 

With less than 40 children currently diagnosed worldwide, families are left feeling vulnerable and isolated with little support.

 Envisage a world where children with TBCD can live a long fulfilling life.

Our fight together is stronger.

Our Vision

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BBC South East News

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