Charity Launch Event for NF2 BioSolutions UK

Sunday 15th September 2019, I will be attempting to run Richmond Marathon to raise money and celebrate the launch of the UK charity arm of NF2 BioSolutions.

My name is Clare Goddard and my family have Neurofibromatosis Type 2 (NF2). NF2 is a rare genetic disorder that affects approximately 1/30,000 individuals globally. It results in the growth of multiple tumours throughout the central and peripheral nervous systems.

It's hard to tell that anything is wrong with my husband and two children, but inside tumours are growing; predominately in their brain and on their spine. Changes are happening.

Olivia‘s brain tumour resected 2015

NF2 BioSolutions is formed of patients, medical doctors, parents, friends and carers of someone affected with NF2 from all around the world. The not for profit boasts 44 global ambassadors representing 28 countries & states. Their purpose and passion is to cure NF2 via gene therapy. So far 3 top gene therapy labs have been selected who have started the preliminary toxicology tests. Conversations with NF2 specialists from all over the world show very positive signs that gene therapy can work to cure NF2.

With the organisation growing and to continue supporting their goal, NF2 BioSolutions UK has been launched to assist in this mission.

If you can donate, please help us to help ourselves in finding a cure for NF2.

NF2 BioSolutions UK charity does not fund any wages and all donations go directly to the gene therapy labs as agreed in our constitution.

Please watch this video from people in the UK and around the world who have NF2 and are working hard to find their cure.

NF2 BioSolutions Website

Thank you xxxxxxxxxx