Advancing gene therapy for NF2 via NBS UK & ROI
Hi and thanks for donating,
I am Clare Goddard, the UK Ambassador for NF2 BioSolutions. I live in Surrey with my husband and two children that have Neurofibromatosis Type 2 (NF2). You can learn more about how NF2 has affected my family here http://bit.ly/GoddardFamilyNF2BioSolutions
NF2 is a disease that allows tumours to grow on nerves. They can form anywhere, but tend to favour the central nervous system of the brain and spine. Nerve damage from tumour growth is debilitating for people with NF2 and causes degenerative weakness and total loss of many functions. A person with NF2 can have a limitless number of tumours to deal with along with degenerative hearing, vision, physical and mental challenges. Numerous operations, chemotherapies and other treatments compact the disease further.
A promising, new, not for profit organisation NF2 BioSolutions are confident that gene therapy for the disease will be a cure and halt the progression.
It is a new foundation created by mostly medical personnels and bioscience researchers that are themselves (or a family member) directly impacted by NF2. Therefore the motivation, purpose, passion and desire to succeed are paramount.
Other rare disease foundations have successfully funded and pushed for a gene replacement treatment of their rare diseases, and NF2 BioSolutions wants to follow that same model.
NF2 is very, very rare, there are only 2,000 people in the UK that have it and they struggle to get their voice heard. NF2 BioSolutions is a global mission by the NF2 family to 'self help' and fundraise for their own futures.
From everyone around the globe with NF2, we really appreciate your help.
Every donation gets seen, every donation pushes us towards a cure. Every donation goes towards gene therapy for NF2, we are all volunteers and we can't do it with you.
Clare Goddard x