NF2 BioSolutions UK and Europe is a patient-led charity focusing on raising awareness and increasing connections, hope and support for NF2-related schwannomatosis (NF2) patients and their families. Its goal is to fundraise for new treatments and ultimately a cure for NF2.
NF2 patients are born with the disease which results in the growth of multiple tumours throughout the central (brain/spine) and peripheral (organ/limbs) nervous systems, including schwannoma, meningioma and ependymoma.
This rare genetic disorder, which affects approximately 1 in 35,000 children and adults globally, is the focus of some of the research at our Centre of Excellence at the University of Plymouth. 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, according to NF2 BioSolutions, may include seizures, vocal cord paralysis, chronic pain, foot drop, tinnitus, spinal and optic tumours and muscle atrophy. The only current treatment is surgery or radiosurgery which often results in loss of function of the involved nerve.
Clare Goddard (pictured above with her family), CEO of NF2 BioSolutions UK & Europe, knows first-hand about the impact of the disease as her husband Scott and two children, Olivia and Zac, are affected and “have to live with scans, appointments and challenges every day”.
We extend a warm welcome to NF2 BioSolutions UK & Europe as they join our family of Member Charities and look forward to working closely with the charity as they seek to find better treatment solutions for this distressing disease.
To find out about becoming a Member Charity, email anju.chadha-mclean@braintumourresearch.org
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