Childhood Tumour Trust

Childhood Tumour Trust A charity for children, young people and their families affected by Neurofibromatosis Type 1

✨🏎️ What an AMAZING day for one of our NF Warriors! 🏎️✨Yesterday, one of our amazing NF Warriors had the most incredible...
23/08/2026

✨🏎️ What an AMAZING day for one of our NF Warriors! 🏎️✨

Yesterday, one of our amazing NF Warriors had the most incredible day out at The British Motor Show! 🚗💨

A huge THANK YOU to the wonderful Barrie Wells Trust - Box4Kids for making this unforgettable experience possible.

From seeing all the amazing cars to soaking up the atmosphere, it was a day full of smiles, excitement and memories that will be treasured for a long time. 🥰

It means so much to our families to have opportunities like this, a chance to forget about hospital appointments and the challenges that NF can bring, and simply enjoy being a kid and having an amazing day out. 🦒

Thank you for supporting our NF Warriors and helping to create such special memories.

From all of us at Childhood Tumour Trust, THANK YOU! 🦒✨

🦴 NF1 Bite-Sized Knowledge – Part 3In Part 3 of our series on musculoskeletal abnormalities in NF1, we look at several o...
22/08/2026

🦴 NF1 Bite-Sized Knowledge – Part 3

In Part 3 of our series on musculoskeletal abnormalities in NF1, we look at several other recognised features of the condition:

🔹 Sphenoid wing dysplasia
🔹 Chest wall abnormalities
🔹 Short stature
🔹 Non-ossifying fibromas
🔹 Bone overgrowth

These features can affect people very differently. Some may cause few difficulties, while others may require monitoring, specialist advice or treatment.

This infographic is based on the webinar presented by Dr David Stevenson, Professor of Pediatrics and Clinical Genetics at Stanford University, and has been prepared with clinical review and support from Dr Gabriella Costa.

This is our interpretation of the webinar, presented in an easy-to-read format to support understanding. It should not replace advice from your own healthcare team.

Please share to help raise awareness and improve understanding of the many different ways NF1 can affect the bones and body.


www.childhoodtumourtrust.org.uk

21/08/2026

🏕️ AND JUST LIKE THAT… CAMP IS OVER! 💙💚

Our final day of camp was one to remember! We packed in some last minute adventures with the Gladiator Wall, climbing wall and trapeze, giving all of our campers the chance to be together, make those final memories and finish camp on a high! 🧗‍♀️✨

At lunchtime, we had a very special celebration as we wished Nia and Finley a HUGE happy birthday! 🎂🎈 We sang, blew out the candles and enjoyed some very well deserved birthday cake together. such a lovely moment to share as a camp family 💚

As we waited for parents to arrive, there was only one thing left to do… TUCK SHOP! 🍭😂 The perfect way to keep everyone occupied before the final goodbye.

We then brought everyone together for our camp certificate ceremony, celebrating every single camper and highlighting their individual achievements throughout the week 🏆💙 Watching each camper receive their certificate was such a special way to end an incredible few days.

And then came the hardest part… saying goodbye 🥹

From new friendships and big challenges to ridiculous amounts of laughter, memories that will last a lifetime have been made.

Until next year, campers…! 🏕️💙💚✨

🌟 Well done to all of our amazing NF Warriors receiving their GCSE results today! 🌟Whatever your grades, remember that y...
20/08/2026

🌟 Well done to all of our amazing NF Warriors receiving their GCSE results today! 🌟

Whatever your grades, remember that you are so much more than a piece of paper. You’ve shown courage, resilience, and determination, qualities that matter most in life.

We are so proud of you all!🦒✨

💙💚

19/08/2026

⛳️ THE SLICE IS RIGHT! ⛳️

Craig, Leigh & Alan have officially completed their incredible challenge of playing 72 holes of golf in just ONE day to raise money for The Childhood Tumour Trust! 🏌️‍♂️💙💚

And they’ve absolutely smashed it, raising over £3,000 so far, with donations still coming in! 🎉

A huge thank you to all three of them for taking on such an epic challenge, and to everyone who has donated and supported them along the way. 🥹

If you’d like to help them push that total even higher, you can still donate here:
JustGiving – The Slice Is Right

https://www.justgiving.com/page/thesliceisright-72h?utm_medium=FA&utm_source=CL&utm_content=link_in_bio

72 holes. One day. £3,500+ raised. What a result! 🏌️‍♂️⛳️💙💚

On 22 July 2026, Dr David Stevenson, Professor of Pediatrics and Clinical Genetics at Stanford University, presented an ...
19/08/2026

On 22 July 2026, Dr David Stevenson, Professor of Pediatrics and Clinical Genetics at Stanford University, presented an insightful webinar on musculoskeletal abnormalities in Neurofibromatosis Type 1 (NF1).

In Part 2 of our NF1 Bite-Sized Knowledge series, we focus on scoliosis—highlighting key information from the webinar in a clear, accessible format.

The need for accurate information is especially important, as we were recently told that a patient had been led to believe their scoliosis was caused by the way they wrote. Misconceptions like this can create unnecessary guilt and distress: scoliosis is not a person’s fault, and nobody should be blamed for developing it.

We extend our sincere thanks to Dr Gabriela Costa Daydí for clinically reviewing these resources and helping us ensure they are accurate and accessible for the NF1 community.

As always, these infographics are designed to support understanding and should not replace personalised advice from your healthcare team.

17/08/2026

Camp memories, new friendships and a whole lot of fun, including, of course, the zip line! 💙💚

Good luck to all of our NF Warriors receiving their A Level or equivalent results today! You are all totally amazing, so...
13/08/2026

Good luck to all of our NF Warriors receiving their A Level or equivalent results today!

You are all totally amazing, so please remember that!

Grades do not show the struggles an individual may have faced just to get to school/college, never mind everything they have overcome along the way.

Today, celebrate YOUR achievement, YOUR journey and everything YOU have overcome.

We are so incredibly proud of every single one of you. 🫶

Address

Hastings
TN35

Website

Alerts

Be the first to know and let us send you an email when Childhood Tumour Trust posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category