COMMUNITY ORGANISATION AWARD FOR DISABILITY –
Neurofibromatosis 1 (NF1) is an incurable genetic condition which very few people have heard of, although the Childhood Tumour Trust are doing their best to change that. The Trust is a charity dedicated to making the lives of children, young people and their families affected by neurofibromatosis type 1 better. They do this in a variety of different ways including a 24/7 Facebook support group, special days out and tickets to various attractions around the country, annual ‘life changing’ camps for teens and tireless hard work to raise awareness and improve services for people affected by NF1. Despite being just a year old, the impact this tremendous charity has had on their target audience is astonishing. The testimonials from children who attend the UK camp are a powerful read, and the ones from the parents echo their children’s sentiment.
We spoke with Vanessa Martin from Childhood Tumour Trust after they won The Community Organisation Award for Disability at The National Diversity Awards 2017. Here’s what they had to say:
What were your thoughts on the other shortlisted nominees within your category?
I found everyone to be so supportive and encouraging of each other even though nobody had ever met before, something many bigger charities don’t or won’t do.
What were your thoughts after winning The Community Organisation Award for Disability?
Completely over the moon, a win for everyone with neurofibromatosis. Finally recognition for a very unknown condition.
What reaction have you received from supporters/fellow employees since winning the award?
One trustee from Leigh said her town have gone mad, wanting to help with fundraising and journalists wanting to cover it, another from Princes Risborough has been asked to go on local Radio and the large firm he works for have suddenly taken much more interest. My local MP Home Secretary Amber Rudd tweeted congratulations and the local paper have covered it.
Now that you have won a National Diversity Award, what are you going to go from here? What are your next steps?
To keep doing what we are doing and hopefully try to raise the profile of the charity and the condition even more and encourage people to fundraise for us
In your own words, how do you feel the work you are carrying out is making a difference?
We can see it making a difference to peoples lives, they are not so isolated and have somewhere to turn when sometimes family just isnt enough. Its lonely having a condition nobody has heard of.
Why do you think it is important to highlight Diversity, Equality and Inclusion?
Because we live in a world where celebrity looks and life style seem to be so important, and people are made to feel that that’s what we should all aim for. The world is made of so many different people who should be able to live their lives without prejudice, the more we highlight D E and I the more people will accept that being ‘different’ is OK.
Who or What is your inspiration?
My daughter Nicole, is my total inspiration – she and all those that are affected by this condition are all too often not listened to by both medics and the public.
What were your thoughts on The National Diversity Awards Ceremony? Did you enjoy your evening?
I was unable to be there, but was there in spirit and followed on Twitter, I felt the emotion and the buzz from 1000 miles away. Gutted to have missed the evening but especially Adam Hills presenting our award! – Mr Diversity himself.
SHARING IS CARING!