21 July 2023
Hello! My name is Alice, I am studying Genetic and Genomic Counselling MSc at Cardiff University.
In my first year, I gave a presentation to my peers and lecturers on Neurofibromatosis Type 2, including the challenges for individuals and families it affects and the support available. I got in touch with Nerve Tumours UK after finding out about their charity from the NHS website, and they kindly provided me with lots of information about their work, experiences from people they have supported, and their mission to improve research and spread awareness.
My final year dissertation will be researching the healthcare experiences of individuals with Neurofibromatosis Type 1. Participants should be aged 18 or over, and received a diagnosis of NF1 during childhood. The research study will take the form of a virtual interview, discussing your healthcare experiences and thoughts about your health and support. See the poster for further information or to take part, email Alice Allsop, student researcher, Cardiff University AllsopAB1@cardiff.ac.uk.
– Alice - Genetic and Genomic Counselling Student Cardiff University/ Fundraiser and Nerve Tumours UK Advocate
"Now my legs have finally recovered from last year. I am running my second half marathon in support of Nerve Tumours UK, a cause close to my heart. During my studies, a lot of my focus has been centred on nerve tumour conditions, which are genetic conditions affecting the nervous system, causing variable symptoms in different parts of the body. Now, my final year dissertation will be researching the healthcare experiences of individuals with Neurofibromatosis type 1, starting this September. There are currently 26,500 people with Neurofibromatosis in the UK. Funds raised will help Nerve Tumours UK maintain their network of specialist Neurofibromatosis nurses across the UK, who provide direct support to individuals and their families, including through school visits and telephone helplines. It is great that Nerve Tumours UK gives you the option to run locally, gives you the option to a variety of challenges and supports me throughout the registration and fundraising."
We can help you find your ideal challenge, click on the link below and view the huge variety of events to suit all tastes.
Through researching the symptoms and treatments of NF2, as well as gaining an insight into the lives of those affected by it from reading their first-hand experiences, I have gained the upmost respect for everyone who is going through these challenges and their strength and determination in overcoming them.
Additionally, I have been in contact with various NF nurses who have also expressed to me their experiences, as well as the challenges of the little awareness and knowledge of NF2 among the public and healthcare professionals, due to the rarity of the condition.
When giving my presentation, I aimed to spread awareness about NF2, as well as the importance of having the appropriate, specialised support from charities, such as Nerve Tumours UK, and other healthcare professionals. When I (hopefully!) become a Genetic Counsellor, I hope to further spread my new-found knowledge and awareness of NF2 and other Neurofibromatosis conditions with others I come into contact with, in order to provide the best and most professional support possible for individuals and their families whom it affects.