The Neurofibromatosis Association, trading as Nerve Tumours UK, supports those who have been diagnosed with Neurofibromatosis (NF), together with their carers, families, and wider support network.
Neurofibromatosis, the umbrella term for a group of genetic conditions (Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2) and Schwannomatosis) and literally translating to mean “nerve tumour increase” is one of the most common neuro-genetic conditions, causing tumours to grow on nerve endings. It has many associated medical, physical and psychological conditions: 60% of those affected have learning disabilities, and up to 75% are registered as disabled. People with NF live in constant pain, can be vulnerable and are often isolated.
More people are diagnosed with NF than those with Hereditary Muscular Dystrophy, Huntington’s Disease and Cystic Fibrosis combined, yet few, including many medical professionals, have heard of the condition.
Nerve Tumours UK provides support and advice for people with NF, and the medical professionals involved in their care, through a Specialist Support Network comprising of regional nurses and advisors, a national helpline, a fully accessible website, regional information days, medical guidelines and much more. Following on from a regional information day held in Bristol in 2019, we now hope to be able to introduce a Specialist Neurofibromatosis Nurse’s post into Bristol, similar to our other regionally based posts located in other neuroscience centres around the country. There are more than 26,500 people in the UK diagnosed with Neurofibromatosis, and yet we only have a frontline team of 12 specialists. Therefore, we need to provide more support , and you can help us to do this by becoming a supporter or by making a donation. To find out more, go to nervetumours.org.uk
Shining a Light in 2022 and celebrating 40 years of Nerve Tumours UK
We are turning 40 this year! Founded in 1981 when Trish Green and Clare Pepperell were brought together by a BBC radio programme called “Does He Take Sugar”, both parents had been trying to find other families affected by Neurofibromatosis.
Initially called “Link: The Neurofibromatosis Association”, the organisation was first registered as a charity in 1982, and since then, the charity has evolved to become Nerve Tumours UK, the leading voice and support network for people living with Neurofibromatosis in the United Kingdom. We need to ‘Shine A Light’ on World Neurofibromatosis Awareness Day in 2022, highlighting our work and support services. By joining a global campaign initiated by the Children’s Tumor Foundation, our US counterpart, Nerve Tumours UK has secured over 200 locations across the UK and Ireland to light up in blue, and so help us achieve our goal of raising awareness.
Tonight, Bristol’s City Hall will be lit up in blue to Shine a Light to mark Nerve Tumours UK’s 40th anniversary and World Neurofibromatosis Awareness Day.