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 research 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 then 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 until her retirement.  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.

We are very lucky to have as part of our Medical Board Dr Kristina Rath. Whilst she is based in the States, we have a lot of members from the USA and felt that this would be beneficial all round by building links across the pond – we can only gain in strength and knowledge by sharing.

Dr. Kristina Rath graduated from Yale University with a Bachelor of Science in Mechanical Engineering. She earned her medical degree from the University of Pittsburgh Medical School where she was elected to the Alpha Omega Alpha Honor Medical Society. She completed her internship and residency in Obstetrics and Gynecology at Yale-New Haven Hospital. She has worked in private practice since 2001 and is a Clinical Instructor in the Department of Obstetrics and Gynecology at Yale University School of Medicine.

Dr. Rath is the mother of three children, the youngest of whom has NF1. She is an avid runner and fund-raiser for NF-related charities. Since 2013 she has maintained a blog, Marathons for My Daughter, which describes daily life for a little girl with neurofibromatosis seen through her mother’s running log.

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!

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.

I have the best job ever! I work as a Teaching Assistant in the Early Years unit of a Primary School hidden in the wilds of Northumberland. I live with my husband Peter and 2 daughters Bethany and Eva. Bethany my oldest is a NF1 Warrior! She was diagnosed with complex Neurofibromatosis Type 1 (NF1) when she was nearly 8 years old and this was only after many questions and hospital appointments from the age of 2, if the Childhood Tumour Trust (CTT) body map inserts had been in Bethany’s Red book when she was born we would most certainly of had a diagnosis at birth! After Bethany was diagnosed I was scared & frightened as I had never heard of NF1 and I certainly should never have Googled it! After this I did a lot of searching on Facebook for help and support groups, luckily I came across the CTT who helped and supported me & my family to better understand NF1. As a family we attended our first CTT event to Alton Towers in May 2017, followed by Bethany attending her first NF1 Camp with the CTT in April 2018 and then again in 2019 where she conquered some fears and made some life long friends who just get it, Bethanys last camp as a camper will be 2023! Bethany refers to camp every year as ‘Supercalifragilisticexpialidocious’! NF1 can be just as hard to deal with for siblings and other family members as well as the NF1 warrior themsleves! The CTT have also helped Bethanys younger sister Eva too! Eva now feels part of the NF1 community and she too has made some amazing friendships as have we with the other NF1 parents. From that first day at camp in 2017, I offered my help and support to Vanessa and since then I’ve never looked back. I feel very humbled to be asked to be a Trustee for the CTT and I look forward to continuing to help and support families living with NF1 but most importantly raising awareness, bringing families together and making a difference!”

I’m Dan I graduated from the University of Huddersfield in 2007 with a BA in history. I am so proud of this as (like so many of NF Warriors) I always found education extremely challenging and people around me strongly advised not to go to university because in their words ‘it was a waste of time and ‘a waste of money’ as I would never graduate. Fortunately with the support and help from my family I worked hard and did graduate and made some great friends and it was an incredible  3 years and although I do not use my degree in my work now, I am still glad that I went.

For the last 8 ½ years I have worked as an account administrator for the leading supplier of car parts in the UK. I find this role incredibly satisfying and very interesting and have realised that I am surprisingly good with numbers.

In my spare time I enjoy cooking and baking – something that my colleagues at work are very grateful for as quite often it means that there is cake or some sort of baked treat. I also go to watch football with my brother and friends whenever I can & am a big Huddersfield town fan.

My first experience with CTT was in 2018 where I attended the camp in Shrewsbury. To say that this experience was life changing would be an understatement. This was the first time that I’d met anyone with NF and it gave me such a better understanding of not only myself but the condition as well!

Meeting and talking with so many children and families who are experiencing the same difficulties that I faced growing up was very overwhelming but it was amazing that they were able to come to camp & be with so many people that were like them and be able to feel normal for a few days was incredibly rewarding. Before 2018 I didn’t really talk about NF as I didn’t really feel comfortable but now thanks to CTT I am able to talk about NF freely and feel so much more Comfortable in myself.

Since 2018 I have helped at two other camps and I’ve been able to experience the wonderful community that CTT has created and it is extremely heart-warming to hear the phrase ‘my NF family’ used to see how much enjoyment everyone gets from these camps. More recently Covid prevented get-togethers but I loved seeing all the online activities that Vanessa and the charity set up and provided for all the families to enjoy and still be able to see each other.

When Vanessa asked if I would be interested in becoming a trustee of CTT I didn’t even have to think about it. To see such a positive impact on so many young people and their families is so unbelievable, and I feel so privileged to be part of

Dianne has three daughters, the youngest of whom has an undiagnosed learning difficulty, hypermobilty and hypotonia. She has experienced the loneliness and frustration of having no diagnosis, and has seen the huge benefits for children diagnosed with NF1, of meeting other children who have the same condition, having fun together and building lasting friendships.

Dianne has been teaching the young (and older) Warriors British Sign Language since many other organised events were forced to cease during lockdown, and she reports feeling so fortunate to have been able to make a difference during that time.

Dianne brings a variety of skills and experience, not only as the mother of a child with additional needs, but also through her work over the years in OT, Social Work Care Management, residential social work and teaching. She was also a school Governor for eight years. Dianne is currently training to be a BSL interpreter. Dianne recently volunteered to help as a camp leader and she is looking forward to doing this again and also contributing to the fabulous work the charity does in her role as Trustee.

I have been a children’s nurse since 2001. In this time. I have worked in children’s cardiac intensive care, children’s intensive care and general paediatrics. I have worked in London and across the south of England For over twenty years I was a member of St. John Ambulance attending events as a nurse. I also volunteered with the Badgers (6 – 10year) and Cadets (11 – 18years) as a youth leader.
I currently volunteer for Daisy’s Dream a charity that supports children that have been bereaved across Berkshire.

My hobbies include volunteering at a steam railway and amateur photography.