Our Story

Uniting and Representing the NF2 Community Since 2013

Our story started in 2013 when we launched as a social enterprise dedicated to the needs of people living with Neurofibromatosis Type 2.

In 2020 we rebranded to reflect the changing needs of the NF2 community in the UK. We aim to strengthen our work advocating for people with the condition by raising awareness of lived experiences and magnifying the voice of those affected by NF2.

We remain committed to ensuring that our work reduces the effects of isolation and builds resilience by supporting, empowering and uniting people with NF2.

2013

CHYU Founded

Established as a social enterprise dedicated to the needs of people affected by NF2

2013

First Book Published

'NF2: Our Journeys' launched to raise awareness around the lived experience of NF2

2013

'Companions in Clinic' launched in Cambridge

Featured on the BBC, this initiative provided a private and safe space for NF2ers and family members to support each other when attending long clinical appointments

2014

Founder, Jess Cook, receives Commonwealth Points of Light award

The Points of Light award is given by the UK Prime Minister on behalf of HM The Queen and recognises those working tirelessly to make change in their communities

2014

CYHU Gatherings launched

CHYU brought NF2ers together from all across the country for the first time in a social and informal weekend. These gatherings became bi-annual events to meet and share experiences with other NF2ers

2014

Going global

CYHU presents at NF conference in Washington, DC

2015

Second Book Gets Funding

CYHU receives grant from the Big Lottery to create a resource for providing insight into the impact of NF2 on people living with the condition

2017

Second Book Launches

'Living with NF2: From Us to You', a much anticipated and critically needed resource for anyone affected by NF2, was released in the UK and paperback copies were donated to all UK NF2 Specialist Clinics to distribute to patients and their families

2018

CYHU Founder receives British Empire Medal from the Queen

In recognition of the impact CYHU has had on the lives of people living with NF2 and our Founder's achievements since 2013

JOIN OUR ONLINE COMMUNITY