12/10/2026
Our founder, Vanessa Martin, puts it bluntly:
โ๐๐๐ฌ ๐๐ซ๐ ๐๐ฅ๐๐๐ญ๐๐ ๐ญ๐จ ๐ฐ๐จ๐ซ๐ค ๐๐จ๐ซ ๐ฎ๐ฌ. ๐๐๐ญ๐๐ซ ๐ฆ๐จ๐ซ๐ ๐ญ๐ก๐๐ง ๐ ๐๐๐๐๐๐ ๐จ๐ ๐ฆ๐๐๐ญ๐ข๐ง๐ ๐ฌ, ๐ฅ๐๐ญ๐ญ๐๐ซ๐ฌ ๐๐ง๐ ๐ฉ๐ซ๐จ๐ฆ๐ข๐ฌ๐๐ฌ, ๐ฐ๐ข๐ญ๐ก ๐ฌ๐จ ๐ฅ๐ข๐ญ๐ญ๐ฅ๐ ๐ฆ๐๐๐ง๐ข๐ง๐ ๐๐ฎ๐ฅ ๐๐ก๐๐ง๐ ๐ ๐๐จ๐ซ ๐ฉ๐๐จ๐ฉ๐ฅ๐ ๐ฐ๐ข๐ญ๐ก ๐๐
๐, ๐ ๐ฐ๐จ๐ฎ๐ฅ๐ ๐ก๐๐ฏ๐ ๐ ๐ข๐ฏ๐๐ง ๐ญ๐ก๐๐ฆ ๐ญ๐ก๐๐ข๐ซ ๐๐๐ ๐ ๐ฅ๐จ๐ง๐ ๐ญ๐ข๐ฆ๐ ๐๐ ๐จ.โ
We know some have tried to help, and we are grateful for that. But families cannot live on good intentions. We need action, accountability and changes we can actually see.
We should not have to campaign for people to receive the care and support they are already entitled toโon top of campaigning for the changes that are still needed.
Our founder, Vanessa Martin, began campaigning at parliamentary level in 2014, before Childhood Tumour Trust was registered as a charity. That work continues through CTT today.
We have also engaged with Lord Hunt and Lord Bassam, who worked hard to support change and helped bring about a House of Lords debate on NF1 in 2015.
A planned meeting with Nicola Blackwood, now Baroness Blackwood, was cancelled, and a later request to meet was declined.
Kevin Hollinrake also wrote to Nadine Dorries on our behalf and spoke up about NF1 in a parliamentary debate on rare diseases.
Yet more than a decade later, families are still asking for clearer guidance, consistent monitoring, better information, fair access to care and understanding in schools.
Our campaigning continuesโfrom recognising and recording NF1, to improving transition into adult care and access to appropriate breast screening.
Behind every letter and meeting are people living with NF1 who need these conversations to lead to change.
As CTT marks its tenth year, we will keep speaking up. Our children are growing up, and adults need support now. They cannot keep waiting.
Sarah Owen MP , George Freeman MP Andy Burnham Carolyn Harris MP Steve Brine MichaelFallon Kevin Hollinrake MP Greg Smith MP Helena Dollimore for Hastings and Rye Nadine Dorries
