Dr Sue Huson - Medical Advisor
Consultant Clinical Geneticist/ honorary Senior Lecturer, Neurofibromatosis (NF) Service, Manchester Centre for Genomic Medicine and Central Manchester University Hospitals NHS Foundation Trust and Genetic Medicine, Institute of Human Development, University of Manchester, Manchester, UK
Sue trained in medicine in Edinburgh and did general training in adult medicine and neurology. During her time in neurology she first encountered NF and reported a family with NF2 with a suggested follow-up protocol for at risk family members. She further developed her NF interest as a reserach fellow with Professors Peter Harper and Alastair Compston in Cardiff. She started the post as a would- be neurologist and switched to a clinical genetics career mid-way. Her population based study of NF1 and gene mapping studies led to the award of MD with gold medal and distinction. After a period of research with the late Robin Winter, she trained in clinical genetics at the Kennedy Galton Centre. As a consultant, first in Oxford and now in Manchester, she has developed her interest and expertise in the diagnosis and management of all forms of neurofibromatosis. Since April 2009 she has led the nationally commissioned service for complex NF1 in Manchester. She helped Professor Gareth Evans in his successful bid to establish a nationally commissioned service for NF2, which started in April 2010. She has acted as a medical advisor for the Neuro foundation for many years and now joins CTT in the same role.
Vanessa Martin - Founder and Trustee
Works in the NHS and has actively campaigned to raise awareness and get better care for those with NF1. She has 2 daughters, Nicole and Molly. Nicole has complex NF1 and is the inspiration behind Childhood Tumour Trust. Because of the confidence that Nicole gained from attending camp in the USA, organised by the Children's Tumor Foundation, the idea for a new charity for children and young people was born - to enable others to have the same experience. Vanessa has run 2 camps in the UK and is keen to link up those with NF1 - wherever they live in the world, give them a stepping stone into adulthood , ensure they know they are not alone and give hope for their future. She represents CTT on the patient and public involvement panels for research bids. Vanessa lives by the sea with their dog , chickens and ducks - she loves to horse ride when she can and is rather too fond of Maltesers!
Dr Carly Jim - Trustee
Chartered Health Psychologist, Senior Lecturer in Psychology at Manchester Metropolitan University (MMU), Administrator of the MMU Neurofibromatosis 1 information and support group on facebook and Neurofibromatosis researcher and knowledge exchange facilitator. In addition to Dr Jim's professional interest in NF she is also the mother to the beautiful 'Princess Ellie' who has complex NF1. Dr Jim is highly committed to improving the well-being of people with NF1 and their families and is delighted to be joining the board of trustees for CTT.
Martin Luc Pomfret - Trustee
Is a classically trained chef and has worked in Michelin stared kitchens in London and restaurants & hotels around Buckinghamshire. Martin studied at Aylesbury College. Martin is currently the Head Chef of a manor house nestled in the heart of the Chiltern Hills which serves as a training facility for a leading accountancy firm. He lives with his wife Angie, two sons Luc and Samuel and their dog, Kaiba. Martin's youngest son Samuel was diagnosed with neurofibromatosis following his 18 month red book health check up. At the same appointment Martin was also diagnosed with neurofibromatosis. Martin has had to have numerous operations due to the condition.
Martin has been using his skills as a chef to produce Christmas puddings for the last 6 years to sell to raise money to go towards research into neurofibromatosis. After seeing an article about how much the US camp had helped Vanessa's daughter, Samuel went on the first NF camp organised by Vanessa and loved every minute of it. Since that first camp Martin & Angie have supported Vanessa with UK camps and when Martin was asked to be a trustee for CTT he gladly accepted.
When not working Martin enjoys even more cooking, entertaining, walking his dog with his family, reading, watching films, listening to music and seeing live bands.
Dawn Groves - Trustee
Dawn has two children. Her youngest has nf1. He was a spontaneous mutation. When he was diagnosed she remembers thinking 'I finally have answers to what the 'birth' marks are' - referring to the cafÃ© au lait marks. Shortly after - he was diagnosed with autism as a high percentage of children with NF1 are. The more she saw and read about neurofibromatosis - a condition she had never heard of previously - the more she wanted to help other families affected by NF1. She is particularly interested in raising awareness of neurofibromatosis. In her words ' I'm deeply honoured to be a part of the Childhood Tumour Trust and look forward to helping spread the word and seeing joy on the faces of the many NF heroes that we support.