Children's charity wins top award

The Childhood Tumour Trust, based at Winchelsea Beach, beat seven others in the running for the Community Organisation Award for Disability at the ceremony, held last Friday (September 8).

The glittering ceremony honoured role models and charities, rewarding Britain’s most inspirational people for their fight against inequality.

Ana Matronic, best known as the female co-lead vocalist for Scissor Sisters, joined forces with TV presenter Brian Dowling to host the event.

The Childhood Tumour Trust (CTT) is a new charity founded by Vanessa Martin. Vanessa Works locally the NHS and has actively campaigned to raise awareness and get better care for those with Neurofibromatosis Type 1 (NF1).

Vanessa has two daughters, Nicole and Molly. Nicole has complex NF1 and Vanessa says she is the inspiration behind CTT. “Because of the confidence that Nicole gained from attending camp in the USA, organised by the Children’s Tumour Foundation, the idea for a new charity for children and young people was born - to enable others to have the same experience,” she said.

Vanessa has run two 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 and said: “I am passionate about raising awareness and better care for children and their families affected by the condition. Neurofibromatosis Type 1 (NF1) is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntingtons Disease combined. Yet so little is known about it.

“Amber Rudd MP has been supportive of the charity and understands the need for better awareness of the condition and the impact that it has on so many who have it.

Speaking at the ceremony talk show legend Graham Norton said: “’Promoting and celebrating diversity is close to my heart, which is why I am thrilled to support The National Diversity Awards! Congratulations to all of this year’s nominees, you all deserve to win!”

On receiving the Community Organisation Award for Disability Vanessa said: “We are delighted to have won! It’s very exciting. The award isn’t just for me it’s to give the people living with the condition the recognition they deserve.

I am over the moon.”