Neurofibromatosis
Hard to say, Harder to live with
Share your #LockdownStory
Neurofibromatosis Type 1 (NF1) is a genetic condition which is often overlooked and mostly misunderstood. With your help we can change that. Which is why we are asking you to join us in sharing your #LockdownStory to help create awareness during Neurofibromatosis Awareness Month this May.
Add your story
What is Neurofibromatosis?
Neurofibromatosis Type 1 (NF1) is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy, and Huntingtons Disease combined.
Complications may include:
- Tumours growing along nerves on the skin and inside the body
- Bone Deformities/Scoliosis (eg Curvature of the spine)
- Sight Problems/Blindness
- Hypermobility/Mobility Issues
What we offer
When your child is diagnosed with an incurable medical condition; your entire world is turned upside down! As a parent/carer you leave the hospital/doctors with your head in a whirl. Having a child who is diagnosed with any medical condition is hard to understand and deal with, but when your child has a diagnosis that Read more...
ATTENDING CAMPS
DAYS OUT FOR CHILDREN & THEIR FAMILIES
BUILDING A NATIONAL VOLUNTEER SUPPORT NETWORK
RAISING AWARENESS
CONTINUING TO CAMPAIGN FOR BETTER CARE
FUNDING RESEARCH
How You Can Help
Make a one-off donation or pledge a monthly gift. Just £2 a month would make a difference.
There are many ways in which you can raise awareness and funds, both of which are so important.
Fundraising and Awareness Ideas:
- Host coffee mornings
- Change light bulbs to blue or green on global awareness day
- Fun runs – great excuse to get in shape
Case Studies
Nicole Martin
Nicole like many other children with NF1 had a very lonely and isolated childhood. She had no real friends and was often left on her own. It didn’t help that she was in and out of hospital almost more than she was in school and with learning difficulties she was seen as different. It was heartbreaking, this was on top of struggling with the medical side of a large tumour causing her immense pain and mobility issues.
When Nicole was 14 she found a camp for children with NF in America, this camp was run by the Children’s Tumor Foundation.
Our Campaigns
Childhood Tumour Trust is proud to initiate and support campaigns which we feel will benefit people with neurofibromatosis type 1. We are currently campaigning for the inclusion of café au lait marks in the Child Health Record (known as the Red Book). We feel strongly that café au lait marks should be included on a body map to avoid late or even non diagnosis of NF1. The majority of children who present with 6 or more café au lait marks before the age of 5 in fact do have NF1.
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