We are very excited to introduce our new Patron, Lorriane Stanley (Karen Taylor from Eastenders)
She has been a great support during NF Awareness Months and we are honoured that she has agreed to be our patron.
“I am honoured to be Patron of CTT, I hope I can raise awareness about this amazing charity and help to have an impact on the lives of families across the UK.”
We are delighted that we are continuing our Dealing with Diagnosis Workshops for parents/carers whatever stage they are on their NF journey, be it 1 week or 7 years you are all welcome to sign up for our free workshops run by Rare Minds. You will need to join our support group on Facebook to be able to join. Rare MindsFacebook Group
We have produced a booklet on explaining an NF1 diagnosis to your child by using our mascot Patches.
We are also happy to send out to hospitals,GP's and health visitors please contact us directly.
Offering a range of gifts and personalised items designed or made by Stacey at Tasana. I am passionate about fundraising so a minimum of 10% of all sales will be donated to a charity.
The relevant charity and donation amount will be mentioned in each listing. I also work with Childhood Tumour Trust to provide their merchandise.
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...
DAYS OUT FOR CHILDREN & THEIR FAMILIES
BUILDING A NATIONAL VOLUNTEER SUPPORT NETWORK
CONTINUING TO CAMPAIGN FOR BETTER CARE
CPD Module: Understanding neurofibromatosis type 1 (NF1)
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.
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.
If you are aged 25 and under and have Neurofibromatosis Type 1 or are closely related to someone under the age of 25 with Neurofibromatosis Type 1 we would love to welcome you to our friendly closed Facebook Support and Information Group full of parents and young people who know exactly what you are going through. For those older than this or with a different type of Neurofibromatosis we suggest you contact www.nervetumours.org.uk who will be able to help you, and if you live in Scotland www.funnylumps.org support familes with those under 18 affected by NF. Click here to join our Facebook Support and Information Group.