NF2 is a rare genetic condition that causes the growth of multiple benign tumours throughout the nervous system, most commonly seen in the brain and spine. NF2 may be passed on from parent to child at the time of conception, or it may start in a family with no previous history of the condition. It occurs in 1 in 35000 of the population, is often life limiting, and currently has no cure.
Due to the rarity of NF2 it is very common for people to feel isolated and alone in what they are going through. Meeting other people living with NF2 has been known to produce a mixture of feelings but is often regarded as a very positive experience for most patients.
Can You Hear Us? C.I.C (CYHU) is the first UK organisation to provide informal Social Gatherings that bring people with NF2 together in a carefree, friendly atmosphere. The primary aims of the Gatherings are; to reduce the effects of isolation, increase resilience, improve confidence and self-esteem, and build a supportive community for people affected by NF2 in the UK.
Many people affected by NF2 require psychological support and often carry the burden of multiple disabilities such as hearing loss, visual impairment, facial nerve dysfunction, swallowing complications, chronic pain, balance difficulties, muscle wastage, restricted limb function, and sometimes are reduced to using a wheelchair.
The Social Gatherings give people the chance to try new things in a supportive environment by featuring a variety of fun, and sometimes slightly challenging, activities that help people to build positive attitudes towards their abilities. Contrary to the usual focus on what NF2 patients cannot do, attention is projected onto the things that they can do, which, with occasional support from others, is much more than they think.
During the Gatherings all members in attendance are encouraged to find a role that assists in the smooth running of the weekend. This adds to the sense of community as well as motivating individuals to take control over their well-being rather than relying solely on an organisation to do it for them. The Gatherings are designed by CYHU staff members (who have personal experience of NF2) using research, feedback and suggestions from previous events to ensure that the Gatherings are tailor made to fulfil the needs of the NF2 community.
The first CYHU Social Gathering was held in December 2013 and the second held in June 2014. Feedback received from both Gatherings suggested that there is a real need for these events and also provided useful insights into how CYHU could improve them in the future. CYHU aim to host two national gatherings a year, which we hope to move to a different location each time, and possibly smaller regional groups in the future.
Can You Hear Us? C.I.C (CYHU) is a social enterprise dedicated to the needs of people affected by Neurofibromatosis Type 2 (NF2) in the UK. Through its work, Can You Hear Us? aims to reduce the effects of isolation and build resilience by supporting, empowering, and uniting people with NF2.
CYHU was founded in January 2013 and in July 2013 published the book NF2: Our Journeys (a collection of inspirational life stories written by people with NF2) to help raise awareness and support those living with the condition.
Following the success of ‘NF2: Our Journeys’ CYHU have developed further initiatives including an online community forum, ‘Our Community’, for people affected by NF2 to connect, monthly support groups at Addenbrooke’s Hospital in Cambridge called ‘Companions in Clinic’, and informal social gatherings to bring people with NF2 together.
To find our more visit www.canyouhearus.co.uk
To host a third Social Gathering on 9th, 10th & 11th January 2015 for approximately 30 people affected by NF2.
As the only UK organisation dedicated exclusively to people affected by NF2 the demand for our services and a thriving community is exceptionally high. In its lifetime so far CYHU has relied solely on the generosity of a small group for financial support and we now hope to expand this. Whilst these donations have enabled CYHU to initiate a number of projects that aim to support those living with the condition, in order for them to grow we must reach out to a wider community of donors and this is why we have turned to Crowdfunder.
How we will use our funds:
- To provide accessible activities to the group (costing approx £30 per person)
- To provide disabled transportation to and from hotel/activities
The NF2 Social Gatherings are at the forefront of what we do at CYHU and we are determined to continue providing these rare opportunities to the UK NF2 community but we must raise the funds to do so. We truly hope that there are both individuals and organisations out there that can help us to persevere in improving the lives of NF2 fighters and their families by contributing to our cause.
“I don’t remember the last time I have laughed so much. I was absolutely sick with nerves before I came, but everyone was so welcoming, friendly and incredibly patient writing things down for me. It was so nice to feel the same as everyone else, not the outsider trying to fit in, and trying to understand the conversation going on around me.”
“It [the CYHU NF2 Summer Gathering] was one the best weekends I’ve spent in a long time. It was great to be part of a group of NF2ers enjoying themselves. Some of us may have had more problems than others but we all understood one another. We didn’t have to make long explanations to other people but could just talk to one another in the way which suited us best – signing, lip reading or speech. How did I feel? Very Happy.”
“Little did I know that it [the CYHU NF2 Summer Gathering] would be one of the happiest moments of my life. I was able to make friends easily and fast, which since loosing my hearing has been nigh on impossible. I never felt stupid, demeaned or overcome by my condition (something quite common in day-to-day life), and find it ironic that I was able to let go of a lot of my fears and stresses regarding my illness while being in an environment where I was surrounded by it.”