Working to raise awareness and support the children and families of those diagnosed with Neurofibromatosis (NF1), the Childhood Tumour Trust launched in 2016 to bring together families with children who are affected by this genetic condition.
Vanessa Martin, Founder and Trustee of Childhood Tumour Trust, who has a daughter, Nicole, with the condition said “25,000 people in the UK live with Neurofibromatosis Type 1. Many of these are children and young people. Their young lives revolve around hospital appointments, consultants, scans and operations. There is no cure. However with regular check-ups and appropriate care, many people affected with NF1 can lead fulfilling lives.”
Dr Carly Jim one of the trustees of CTT and senior lecturer and researcher for NF1 at Manchester Metropolitan University said “this is simply fantastic, greater exposure for NF1 around the Manchester area will be invaluable”
Manchester is also home to one of the 2 national centres in the UK for complex NF
“We are extremely grateful for the support of B&M Waste Services in both assisting to pay for our events where families get together and camps where children come together, as well as future plans to assist us in promoting awareness of NF1 on the side of their ‘Big Yellow Trucks’ across Manchester.
The more families and healthcare professionals that become aware of the condition the better. Whilst NF1 has many symptoms, the majority of children with the condition will have 6 or more coffee coloured marks on their body – often dismissed as ‘simply’ birth marks. We encourage any parent who may be concerned about this, to approach their health visitor or doctor.
Jayne Kennedy, Marketing Manager at B&M Waste Services said “One of our waste operatives, Mark Anderson, made us aware of CTT as his son Sam has with NF1. He has been extremely grateful for the charity’s support through their online Facebook group, as well as their annual family day out to Alton Towers, and suggested they become our nominated charity. I’ve been so impressed at how far they have come from being just a group of concerned parents to supporting over 700 families across the country, with a great number of those being from the Manchester area. Nicole and Vanessa as well as all the others who are working to ensure families get the support they need, and that healthcare professionals become aware of the condition, are exceptional. We are immensely proud to be supporting such a fantastic charity, and urge other businesses to join in too.”
To find out more about NF1 and the Childhood Tumour Trust visit www.childhoodtumourtrust.org.uk