Vanessa founded the Childhood Tumour Trust after being inspired by her own experience with Neurofibromatosis Type 1 (NF1). Her daughter, Nicole was diagnosed in 2000 at the age of 3, when there was very little direct support available, leaving Vanessa feeling very isolated.  Nicole attended a camp in the United States as a teenager, where she met other young people living with NF1. This transformative experience highlighted the importance of peer support, which led Vanessa to create similar opportunities in the UK. Vanessa is passionate that nobody should face the uncertain journey of NF1 on their own. 

The Childhood Tumour Trust has grown into a national charity providing camps, activity days, and educational resources to children, young people, and families affected by NF1. Vanessa has dedicated herself to raising awareness, improving access to care, and advocating for greater understanding of NF1 among healthcare and educational professionals.

In her free time, she enjoys traveling in her campervan with her 2 rescue dogs and spending time on the beach and horse riding whenever she can.

Kirsten is the Chair of the Childhood Tumour Trust, a cause close to her heart following her eldest son’s diagnosis with NF1 at the age of three in 2020. “Discovering CTT and their incredible work to raise awareness, connect families, and empower young people with NF1 has been a lifeline for us. Feeling included and supported is something every parent wants for their child, and CTT makes that possible.”

Kirsten is also the CEO and Founder of two organisations, multi-award-winning Kamwell and Life Surfer, both of which are dedicated to educating, supporting and empowering individuals and organisations to take a more human-centred approach to leading, living, and working.

Kirsten lives in Oxfordshire with her husband, three children, and their black Labrador, Barney. In her spare time, she enjoys socialising with family and friends, eating nice food, attending live music events, staying active, and occasionally training for the odd marathon or sportif!

Lizzie lives in East Sussex and is a mum of three. Her connection to CTT began through the charity’s founder, Vanessa, whose sheer will and determination to make a difference have been truly inspiring. “Seeing what Vanessa has achieved made me want to get involved.”

As a Trustee, she plays an important role in supporting the charity’s administration and day-to-day finances. While she doesn’t have a direct connection to NF1, Lizzie is passionate about the impact CTT has on families and young people living with the condition.

Joanne has the best job ever! She works as a Teaching Assistant in the Early Years unit of a primary school nestled in the wilds of Northumberland. She lives with her husband Peter and their two daughters, Bethany and Eva. Bethany, her eldest, is an NF1 Warrior! She was diagnosed with complex Neurofibromatosis Type 1 (NF1) at nearly eight years old, after years of questions and numerous hospital appointments from the age of two. “If the Childhood Tumour Trust (CTT) body map inserts had been in Bethany’s Red Book when she was born, we most certainly would have had a diagnosis at birth!”

Joanne had never heard of NF1 before Bethany’s diagnosis. “I definitely shouldn’t have Googled it! Afterward, I searched extensively for support groups on Facebook.” Eventually, she discovered CTT, who provided invaluable help and guidance for her family to better understand NF1. As a family, they attended their first CTT event at Alton Towers in May 2017. Bethany then attended her first NF1 camp in April 2018 and again in 2019, where she conquered fears and formed lifelong friendships with others who just “get it.” Bethany lovingly describes camp every year as “Supercalifragilisticexpialidocious!”

Joanne recognises that NF1 impacts siblings and families just as much as the NF1 warriors themselves. Thanks to CTT, Bethany’s younger sister Eva now feels part of the NF1 community and has also built wonderful friendships. Joanne and her husband have connected deeply with other NF1 parents as well. From their very first day at camp in 2017, Joanne offered her help and support to Vanessa and the CTT team and has never looked back.

“I feel incredibly humbled to be a Trustee for CTT. I’m passionate about raising awareness, bringing families together, and making a difference in the lives of those living with NF1. It’s an honour to support this amazing community.”

Kay Ashton MBE, in her 30s and from the North West, lives with NF1 and has channelled her experiences into becoming a dedicated trustee and youth coordinator for CTT. Kay’s passion goes beyond traditional volunteering—she’s an avid blogger, sharing her journey of living with NF1, and a podcaster, engaging audiences with her stories and insights about living with disabilities.

Kay is also a published author of two books, offering profound perspectives on resilience and overcoming challenges. Outside of her charity work, Kay is a solo mum to her wonderful son, born through groundbreaking PGD-T technology to avoid passing on NF1.

Martin is from Buckinghamshire, married, and has two sons. His youngest son, Sam, was diagnosed with NF1 at 18 months old, and during the same appointment, Martin was also diagnosed with NF1.

Martin has been involved as a Trustee with the Childhood Tumour Trust since its inception and has personally witnessed the incredible impact the charity has on the lives of those affected by NF1. His son, Sam, has attended camps and activities, and Martin truly believes these experiences have helped shape Sam into the person he is today.

He is committed to helping others affected by NF1, as well as their families, receive the support they need. Martin hopes his work with the charity will continue to make a positive difference in the lives of others, just as it has for his own family.

Mel is an accomplished finance professional with extensive experience in both the corporate and not-for-profit sectors, bringing a wealth of expertise to CTT. She is deeply committed to the charity’s mission, driven by her personal experience as a parent to a daughter with NF1, who has found acceptance and understanding through CTT’s work.

Sunil is an experienced media and educational professional with over 25 years of expertise in developing and delivering media strategies and partnerships for some of the world’s largest pharmaceutical companies and charities.

In his day job, Sunil works at a leading global pregnancy and parenting channel, bringing this experience and expertise to the vital work of the Childhood Tumour Trust and its future growth plans.

Sunil is a football enthusiast – both watching and playing – and is reputed to be a decent goal scorer! He is also an average dad-joke teller and loves spending time with his family.

Jodie is a nap enthusiast, dog lover, self-professed hot drink addict, and an “accidental” collector of mugs. A proud Smoggie who buys far too many new notebooks, Jodie lives with what is considered a “mild case” of Neurofibromatosis Type 1 (NF1). Growing up, she knew only two other people with the condition: her late father and her brother. As a child, Jodie feared her NF1, a fear fuelled by worst-case scenarios presented by specialists who spoke to her parents about her condition but never directly to her. She sadly lost her father to NF1-related complications in 2019. As an adult with no real place to turn, NF1 seemed scarier than she ever imagined.

Now, as a trustee, Jodie takes immense pride in being part of an organisation that works to alleviate the loneliness, fear, and confusion experienced by children, young adults, and their families facing an NF1 diagnosis.

In her spare time, Jodie is a Girl Guide leader, running her local Rainbows unit. She finds immense gratification in witnessing the transformative power of peer groups and structured activities on young people’s lives – a sentiment she also experiences through her work with CTT.

Dan is an accounts administrator for the UK’s leading car parts supplier, where he has spent the past 10 years honing his surprising talent for numbers. A graduate of the University of Huddersfield with a BA in History, Dan’s journey to achieving his degree taught him the value of resilience and perseverance – qualities he carries into every aspect of his life.

Dan’s involvement with the Childhood Tumour Trust (CTT) began in 2018 when he attended a camp in Shrewsbury – a truly life-changing experience. For the first time, he met others affected by Neurofibromatosis (NF) and found a sense of community and support that was eye-opening. Before CTT, Dan rarely spoke about NF, but since that first camp, he has gained the confidence to embrace his condition and discuss it openly.

Since then, Dan has been actively involved in planning and organising future camps, witnessing firsthand the incredible impact CTT has on families. When asked to become a trustee, he didn’t hesitate, feeling honoured and excited to contribute to the remarkable work CTT does for young people and their families.

Outside of work, Dan is an avid cook and baker, much to the delight of his colleagues, who often enjoy sampling his latest creations. A lifelong Huddersfield Town supporter, he loves attending matches with his brother and friends.

Josh is a newly qualified doctor working at Leeds Teaching Hospital Trust. He previously studied at the University of Liverpool, achieving Master’s of Research (MRes) and Biological Sciences (BSc) degrees. He then studied Medicine (BMBS) from the University of Southampton, whilst also completing a Bachelors of Medical Sciences (BMedSci) degree.

Josh has a longstanding interest in Paediatrics and during his time at Southampton, he entered the Student Voice Prize and was linked to the Childhood Tumour Trust. He has since joined the charity in an advisory role. He  has attended the Neurofibromatosis conference in Phoenix and Brussels and will  attend the next world NF conference in Washington DC, acting to convey new research topics to the charity members.