The Charity: Nerve Tumours UK funds a team of regional, specialist nurses to support and advise both children and adults diagnosed with NF:  there are three neuro-genetic conditions: Neurofibromatosis Type 1 (NF1); NF2-related-Schwannomatosis (NF2), and Schwannomatosis (SWN). We are going to paddle 55km from the Isles of Scilly to Sennen Cove in Cornwall to raise money to fund an NF Specialist nurse for the South-west to help and give support to those in need.

NF is one of the most common neuro-genetic conditions that causes tumours to grow on nerve endings and can result in many associated medical, physical and psychological conditions like learning disabilities, scoliosis, as well as the need for regular surgical intervention. Up to 75% of NF patients are registered disabled.

The three dominant genetic conditions can be passed on in families from one generation to the next through genetic inheritance. However, about half of nerve tumours cases recorded have no previous family history of the condition. In other words, it can occur totally “out of the blue”. NF is not well understood by the medical profession and many non-medical professionals have little or no knowledge of the condition, therefore regional specialists have become key established sources of expertise and support.

Children: For children with NF, early intervention and education is vital. The NF Specialist becomes a key resource for all associated medical and health professionals like Occupational Therapists, Physiotherapists, Speech and Language Therapists, Child and Adolescent Mental Health Service Teams and as well as their teachers. Working with this Specialist can lead to shifts in attitudes and produce appropriate support especially for children who have been diagnosed with ADHD/ADD and ASD, all of which can result from this condition.  This makes their learning experience in school more positive and is conducive to increasing their confidence and academic achievements.

Adults: Likewise, for adults, who experience issues in the workplace or struggle with the benefit system, the NF Specialist is there to support and help them cope with medical concerns and everyday issues, thus relieving stress and maximizing their opportunities.

Devon & Cornwall: The charity does not receive any statutory or local authority funding but through donations and fundraising events they strive to fund a part-time community based Specialist NF Nurse to cover Devon & Cornwall to look after a group of very vulnerable individuals and this service is ever more vital in the current climate.

Currently, there is a caseload of more than 600 patients in Devon and Cornwall diagnosed with NF. When an NF patient is seen by an NF Specialist, it has been found that a network of at least 8 additional people including parents, siblings, teachers, employers and medics will benefit from their expertise. More than 5,000 individuals have been educated and helped via the NF Specialist Advisor based in Plymouth. Without Nerve Tumours UK, and your support, this service would not be available to individuals and families in Devon & Cornwall.

We are supporting Nerve Tumours UK because their mission means a great deal. They provide crucial support to people and families living with NF and therefore we are going to paddle 55km to raise money for this charity.