What we do
NF2 BioSolutions UK is a registered charity in England & Wales. Registered charity number 1189618.
We are a non-profit, patient led organisation arm of NF2 Biosolutions, our purpose is to increase awareness of NF2, connect patients for support and offer hope to patients and their families. We are run entirely by volunteers. We provide a platform in the UK and Europe to raise awareness and funds towards seeking a cure or preventative treatment for NF2 by vigorously supporting and advancing existing and next-generation biomedical technologies, such as gene therapy and immunotherapy.
Ultimately, we envision a world where those living with NF2 will have access to cutting-edge solutions to live full and productive lives, free from daily physical and emotional pain or suffering.
About NF2
NF2 is a rare genetic disorder affecting approximately 1/35,000 individuals globally across all races, ethnicity, and genders. NF2 results in the growth of multiple tumours throughout the central and peripheral nervous systems, including schwannomas, meningiomas, and ependymomas. The cause of these tumours is a defect in the NF2 gene. The NF2 gene encodes for a protein called Merlin. Merlin functions as tumour suppressor that in healthy individuals prevents the growth of tumours. Tumours that grow on the hearing nerves, called vestibular schwannomas, affect almost all NF2 patients and result in hearing loss, severe balance problems, and facial paralysis. Other symptoms may include (but are not limited to) seizures, vocal cord paralysis, chronic pain, foot drop, tinnitus, spinal & optic tumours, and muscle atrophy. The only current treatment is surgery/radiosurgery which often results in loss of function of the involved nerve. Individuals with NF2 exhibit a wide range of phenotypic variability.
Our Trustees
Nicole Henwood M.D. President and CEO of NF2 Biosolutions
Dr. Henwood is the mother of A.J. Henwood (age 7), a vibrant and loving child who was diagnosed in early 2018 with NF2. She is a physician and did work during her college years at the University of Pennsylvania’s Institute of Human Gene Therapy.
Gilles Atlan, Vice-President of NF2 Biosolutions
Gilles has 20 years of experience in the software industry, and currently works for SAP Labs as an Innovation Manager. Gilles’s daughter, Karen, was diagnosed at age of 6 due to a juvenile cataract. Today Karen is 11 and already has undergone 3 surgeries (2 eyes, 1 brain).
Gareth Evans, M.D., PhD
Professor Evans has established an international reputation in clinical and research aspects of cancer genetics, particularly in neurofibromatosis and breast cancer. He has developed a clinical service for cancer genetics in the North West Region of England, UK which is nationally regarded
Deian Owen, Treasurer
Deian is a Chartered Accountant and Chartered Tax Advisor from South Wales, UK. Deian graduated in 2003 with a First Class Honours degree in Materials Science and Engineering, and also holds a Master of Research degree in Materials Engineering from The University of Wales, Swansea, UK.
Clare Goddard (Trustee, UK Ambassador, Charity Lead of NF2 BioSolutions UK & Europe)
Clare works in the sales and marketing sector for new business strategy and operations. She is the NF2 Biosolutions charity lead and on the board of Directors of NF2 BioSolutions. Clare’s husband and 2 children have NF2. Please contact Clare on clare@nf2biosolutions.org
Joanne Ward
Joanne is Chief Operations Officer at NF2 BioSolutions UK, running the social media accounts, collaborates with organisations to expand our network, makes sure everyone has the fundraising resources they need and sends out our logo’d merchandise, to name but a few jobs! Joanne has NF2 and was diagnosed in 1999, she is a stay-at-home mum to 2 Boys, the youngest, Oscar, 10 has inherited NF2.
Please contact Joanne on joanne@nf2biosolutions.org
Kim Whitlock
Kim works as an MS Specialist Nurse and has experience working in Neuro Sciences. She was diagnosed in 2013, having previously had surgery for what was thought to be a sporadic VS. She is married with 3 children, who fortunately did not inherit NF2-SWN, and is keen to see proper advancements for the children & adults who will be diagnosed in the future.
Please contact Kim on kim@nf2biosolutions.org
Priya Sharma
Andy White
Andy lives in Brussels and has spent the last twenty years of his professional life specialising in assessing the competencies of professionals for senior leadership roles in private sector multinationals and the international public sector. Andy’s daughter Rebecca, now 36, was diagnosed with NF2 in 2019 and has been treated with Avastin since then.
Contact Andy on andy@nf2biosolutions.org
Grace Gregory
Grace has been an NF2 BioSolutions UK and Europe-funded PhD student since 2021, with a research background in neuroscience and drug discovery. She is based at the University of Manchester (UK) and her doctoral studies focus on how inflammation may drive tumour growth in NF2. Committed to science communication and the NF2 community, she curates and writes for the NF2 BioSolutions UK and Europe blog and can be contacted at grace@nf2biosolutions.org
Ambassadors
Ebony Jade Barber
Hi I’m Ebony-Jade and I’m the Young Adult Ambassador for Wales. I work full time for a private hospital company and run my own small business. I was diagnosed with NF2 at the age of 14 and I’d love to raise more awareness for our condition! Let’s hope for a better future!
Deborah O Neil
Deborah is our Scotland Ambassador for NF2 Biosolutions. Deborah and her daughter live with NF2
Olivia Goddard – Young Person’s Ambassador
Hello! My name is Olivia Goddard, I am 21 years old and I am the young person’s ambassador for NF2 BioSolutions UK and Europe.
I myself am a proud NF2 fighter. By the age of 16 I had undergone 3 major operations in the space of 2 years, one of which led to me being blind in my right eye.
My aim in this role is to raise awareness and help young people with NF2 to recognise and open up about their mental health surrounding this condition. I know personally that this condition is as much of a mental battle as it is a physical one.
Keep an eye out on our social media for more info!
If you know of anyone over 18 that might be interested in speaking to me then don’t be afraid to get in touch!
Thank you!
Liv x
UK Charity Team
Kerry Davies
Kerry was diagnosed with NF2 in 2015
Hannah Simpson
Hannah was 13 when she was diagnosed with NF2, which she inherited from her father. Hannah is a veterinary nurse and she worries that eventually when her hearing deteriorates, she won’t be able to do that anymore. She try to stay positive and informed on NF2 and she is lucky to have a loving and supportive family.
Please contact Hannah on hannah@nf2biosolutions.org
Diana Alexandre
Diana is a busy mum living in London, she has NF2 as does the eldest of her 4 children.
Nicole Miller