Patient Testimonial – Jonathan Bracey – Sponsored by Clinigen

Jonathan began his career in the British Army before joining Generics UK in 2001.  Since then he has worked for both sponsors and vendors in the world of clinical supplies.

In August 2023, Jonathan’s 2-year-old son, George, was diagnosed with a rare childhood cancer – rhabdomyosarcoma.  In March 2024, George underwent a groundbreaking operation at Kings College Hospital involving nano-knife technology and a large resection of his liver.  This removed 100% of the tumour.  At that time, George was the only child to have had this procedure in the UK and the youngest globally.  Today, George is healthy and doing well.

In conjunction with his cancer treatment, George underwent full genome testing.  The testing revealed that George has 2 rare genetic conditions: Silver Russell Syndrome and Mosaic Variegated Aneuploidy (MVA) syndrome.  MVA syndrome means that George has a predisposition to a number of different cancers.  Currently, there are no patient support groups, advocacy / information sites or charities to support this condition anywhere in the world.  To address this, Jonathan set up the MVA Society, a parent led, research charity to support research into this rare chromosomal condition as well as ensure other patients and their families have a support network.

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