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Shelley Simmonds

Participant Panel member

Shelley is enrolled in the 100,000 Genomes Project as mum to her little, Fraser. Unlike most other participants, Fraser already had a diagnosis prior to enrolling – the family were told when he was a young baby that he has Duchenne muscular dystrophy, a genetic muscle-wasting condition causing life-long disability. However, Fraser has been far from a typical textbook presentation of his condition, leading his healthcare professionals to believe that he has another genetic condition alongside having Duchenne – it is the hope that the Project will find the answer.

Shelley is a passionate advocate and campaigner for rare disease and disability rights, with a strong desire to better educate others about inclusion, accessibility and equality. Having been the recipient of a life-changing diagnosis for her son, she also has an interest in how healthcare results are communicated to patients and ensuring patient well-being and understanding is at the forefront of all scientific and genomic research.

By day, Shelley works as a Company Secretary in London, with a professional background in governance, operations and HR. Shelley is also a Trustee of Disability Rights UK.

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