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Patron Lord Hunt of Kings Heath

Lord Hunt is a committed supporter of the Childhood Tumour Trust and wants to see people with NF1 and their families get much more support from the NHS and other services. Lord Hunt initiated the first debate held in The House of Lords on Neurofibromatosis.

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Patron Rakie Ayola

Cardiff Actress, Rakie is a Fellow and Graduate of the Royal Welsh College of Music and Drama. She has worked extensively in theatre, film and television. . Rakie's many appearances on TV and film include playing The Hostess in Doctor Who (Midnight), Chief Judge in Dredd and Nurse Kyla Tyson in 3 series of Holby City.

Her theatre credits include lead roles for companies such as The National Theatre, The Royal Shakespeare Company, Birmingham Repertory Theatre, Manchester Royal Exchange, Edinburgh Royal Lyceum and Shakespeare's Globe. She is Co - Founder of the Interactive Shakespeare Company.

She is currently playing Nora Attah in Channel 4's Police Drama 'No Offence'

Rakie is delighted to become a Patron of the Childhood Tumour Trust. As the mother of a child with NF1 she knows only too well how important it is for children with the condition to be able to spend time together at the camps and social events organised by the charity. Rakie is also wholly behind the charity's campaign to have cafe au lait marks (CALS) logged in the 'red book. '

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Ambassador Stephanie Millward MBE

Stephanie Millward is a Paralympic swimmer who has multiple sclerosis but feels the fights are similar. She hopes to raise awareness of neurofibromatosis so that inevitably by raising NFs profile and funding treatments, a cure will be found. She won 5 medals at the 2012 Paralympics and fulfilled her dream by winning Gold at Rio in 2016- dedicating the medal to those with NF and MS.