Working across the country but with a hub in Manchester, the Childhood Tumour Trust is committed to raising awareness and offering support to families, children and young people who are affected by Neurofibromatosis Type 1. B&M Waste Services has chosen CTT as its nominated charity for Manchester.
What is Neurofibromatosis Type 1?
Neurofibromatosis Type 1 (or NF1) is a genetic condition that’s more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntingdons Disease combined.
Anyone can have a child with NF1. Symptoms may include:
– Tumours growing along nerves on the skin and inside the body
– Bone deformities / Scoliosis (e.g. curvature of the spine)
– Sight problems / blindness
– Hypermobility / mobility issues
– Learning difficulties (e.g. Dyslexia)
– Social skill difficulties (e.g. Autistic Spectrum Disorder)
– Attention and impulsivity disorders (e.g. ADD / ADHD)
– Co-ordination difficulties (e.g. Dyspraxia)
– 95% of NF1 sufferers will have 6 or more coffee coloured patches on their skin (called Cafe au Lait marks)
What does the Childhood Tumour Trust do?
As well as raising awareness, the charity aims to support those affected by helping them to feel less isolated. They have a secure online support group, a Facebook group for 16-25 year olds to chat (run by their own Youth Ambassador) and also arrange camps in the UK and USA so that children affected by NF1 can meet others like them and spend time away from hospital, school – and parents! The Childhood Tumour Trust also arranges special days out for the whole family so that every member feels equally involved.
The charity also works with Parliament to raise awareness of NF1 amongst medical professionals, as well as producing literature to help medics – mainly Health Visitors – to diagnose NF1 as early as possible, as well as arming them with the necessary information to offer on-going care.
Did you know…?
– Childhood Tumour Trust is leading the way in early diagnosis of NF1. They have produced a Body Map for use in the Child Development ‘Red Book’ that helps midwives and health visitors recognise the signs early on and refer the child accordingly
– CTT has also produced an insert for the Red Book to guide paediatricians, GPs and parents in how to care for a child with NF1
– In 2017, CTT won a National Diversity Award for ‘Community Organisation Award for Disability’
– May 17th is NF Awareness Day
– Patrons of CTT include Rakie Ayola and Lord Philip Hunt OBE
How do donations help?
– £350 pays for one child to have time away at a camp in the UK
– £2 covers the cost of a Red Book insert on NF1
– £1 covers the cost of one Body Map in the Red Book to enable earlier diagnosis of NF1
– £55 covers the cost of one person at a VIP theme park day out
– £1700 covers the cost of a conference including staff to raise awareness of NF1 with school nurses, health visitors and midwives
– £300 pays for a presentation to a group of GPs or Health Visitors
– £1 pays for a letter to be sent to a school explaining how a child with NF1 may have to miss school and should not be penalised for attendance
– £10 pays for a teddy to be sent to a child who is in hospital or having a particularly bad time
– £1300 pays for a flight for one young person to attend a special camp in the USA
– £100 pays for one representative of CTT to attend a meeting in Westminster
How are we helping?
In 2020 twelve B&M colleagues will be taking part in the Great Manchester Run. All money raised will be matched by B&M and donated to Childhood Tumour Trust. Donate on Just Giving here.
As well as our regular annual donation, we promote the Childhood Tumour trust on the sides of our Manchester vehicles to raise awareness, and alerting the businesses we work with to CTT and NF1. Read more about this here