A Voice For Lived Experience
We are a community-led social enterprise dedicated to the needs of people living with NF2-related schwannomatosis in the UK
OUR TEAM HAVE LIVED EXPERIENCE OF NF2-RELATED SCHWANNOMATOSIS
Back in 2012, we started with a simple idea that brought together 44 NF2ers from across the globe to share their story of life with the condition. This resulted in the UK’s first lived experience resource, ‘NF2: Our Journeys’.
Since then, we have led clinic day support groups, launched our online community networks, introduced our social gatherings and even produced a second book. We have worked tirelessly to reduce isolation and show that life doesn’t have to be dictated by NF2.
Jess Everett
Founding Director & CEO
Paul Scales
Programme Director
Suzi McGowan
Volunteer Administrator
Joanne Ward
Online Moderator
Sharron Hatherley
Online Moderator
OUR SERVICES ARE CREATED BY AND FOR NF2ERS IN THE UK
We strongly believe that lived experience should be at the forefront of all NF2 services. All of our team live with NF2 and as a result, we are a truly representative organisation providing services in response to community feedback.
From our Board of Directors, to our online moderators, we are passionate about ensuring that anyone diagnosed, or living with,NF2 has access to a community of people who can support them in times of need.
OUT NOW
NF2 & You Podcast
Our video podcast, NF2 & You, is brought to you by CHYU for the NF2-related schwannomatosis (NF2) community, and focuses on issues that affect the daily lives of NF2ers. We’ll be discussing all things work, play, relationships, rights, health awareness, and everything in between. New episodes dropped every other Thursday featuring guest contributors.