Childhood Tumour Trust

10/09/2026

🧠 ADHD in Neurofibromatosis Type 1 (NF1)

ADHD affects around 30–50% of children with NF1, but it will not look the same in every child. Symptoms can also change as children grow, affecting their learning, behaviour and everyday life in different ways.

Early recognition, individualised support at home and school, and regular reviews can make a real difference—helping children build confidence and reach their potential.

This infographic, created with Ninefi, explains how ADHD symptoms may change throughout childhood and why support should always reflect each child’s individual needs.

www.childhoodtumourtrust.org.uk

09/09/2026

🌍🐻 TODAY IS NATIONAL TEDDY BEAR DAY 🐻🌍

We couldn’t let Teddy Bear Day pass without giving a little shout-out to our very own Patches the Giraffe! 🦒💙💚

Because Patches isn’t just a cuddly giraffe, he’s pretty much part of the CTT family!

He’s been to hospital appointments, MRI scans, operations and check-ups, basically places where nobody really wants to be, but having Patches there makes things just that little bit easier.

And when he’s not busy being a proper little superhero, he’s off having fun with our NF Warriors, going on days out, getting cuddles, causing a bit of mischief and, of course, making sure he never misses out on afternoon tea! 🧁☕️

We love seeing where Patches ends up next because somehow he always seems to be right in the middle of the action! 🦒

For our NF Warriors, Patches is a little bit of comfort on the hard days, a familiar face when things feel scary, and a very cuddly reminder that they’re never doing it alone. 💙💚

Wishing a very happy Teddy Bear Day to our very own Patches, who, let’s be honest, probably thinks every day is Patches Day! 🦒💙💚

Link to order Patches:- https://cttshop.org.uk/products/patches-cuddly-toy

08/09/2026

Are you living in Northern Ireland and affected by NF?

NF Ireland is holding an Open Day—a wonderful opportunity to hear talks and presentations, learn more about NF, and connect with other individuals and families who understand.

Please take a look at the post below for further details. We would love to see members of our Northern Ireland community there! 💙

Registration is now open for the NF Ireland Open Day 2026

We are delighted to invite the NF community to join us at Croke Park, Dublin on Saturday 24th October 2026 💙💚

The Open Day will bring together individuals and families affected by Neurofibromatosis, healthcare professionals and the wider NF community for a day of expert talks, information, help and support.

Our speakers will cover areas including NF services, genetics, neurology and living with Neurofibromatosis, with plenty of opportunity to learn, connect and meet others from across the NF community.

📅 Saturday 24th October 2026
🕙 From 10:00am
📍 Croke Park, Dublin – Celtic Suite
🍽️ Light lunch provided
🚗 Free parking available
🎟️ Registration is free, but advance registration is required.

👉 Find out more and register here: https://buytickets.at/theneurofibromatosisassociationofirelandclg/2392371

Childhood Tumour Trust Croke Park Meetings & Events

08/09/2026

We know that many in Northern Ireland with NF1 feel out on a limb.

We love the fact that we work closely with NF Ireland and they have extended a welcome to all of you in Northern Ireland to attend their open day

Registration is now open for the NF Ireland Open Day 2026

We are delighted to invite the NF community to join us at Croke Park, Dublin on Saturday 24th October 2026 💙💚

The Open Day will bring together individuals and families affected by Neurofibromatosis, healthcare professionals and the wider NF community for a day of expert talks, information, help and support.

Our speakers will cover areas including NF services, genetics, neurology and living with Neurofibromatosis, with plenty of opportunity to learn, connect and meet others from across the NF community.

📅 Saturday 24th October 2026
🕙 From 10:00am
📍 Croke Park, Dublin – Celtic Suite
🍽️ Light lunch provided
🚗 Free parking available
🎟️ Registration is free, but advance registration is required.

👉 Find out more and register here: https://buytickets.at/theneurofibromatosisassociationofirelandclg/2392371

Childhood Tumour Trust Croke Park Meetings & Events

07/09/2026

We LOVE working with Barrie Wells Trust - Box4Kids just look at this amazing day out.

05/09/2026

Leaving on Monday. In a banger to Spain for Childhood Tumour Trust . Read their story.

Four British mates are preparing to swap the comfort of home for a 1,300-mile road trip across Europe in a £400 Ford Focus

05/09/2026

For International Day of Charity, our Youth Ambassadors Bethany and Jacob asked some of you:
“What does Childhood Tumour Trust mean to you?” 💚

From support and understanding to friendship, community and hope, CTT means something different to everyone, but together, we’re one incredible community 🫶🏼

A huge thank you to everyone who shared what CTT means to them. Your words show just how powerful charity and community can be 💙

04/09/2026

Read our founders statement on Mirdametinib. Exciting news released by NICE today.

Around 200 children and young people with rare nerve tumours could benefit from a new treatment option after NICE recommended mirdametinib in final draft guidance: https://lnkd.in/e5irpFuy. The treatment is for people with symptomatic inoperable plexiform neurofibromas caused by neurofibromatosis ty...

04/09/2026

Exciting news. A 2nd treatment approved for funding by NICE for inoperable symptomatic plexiform neurofibromas in NF1

www.childhoodtumourtrust.org.uk