We are looking for a dynamic individual to help support children, young people and adults impacted by cavernoma, an abnormality of blood vessels in the brain or spinal cord.
CAVERNOMA AND CAVERNOMA ALLIANCE UK
1 in 625 people has a cavernoma; a cluster of abnormal blood vessels in the brain or spine that look like a raspberry. Whilst most people don’t experience symptoms, those who do can have haemorrhages, seizures, headaches, neurological problems and a range of other life impacting symptoms. Cavernoma Alliance UK (CAUK) is a member led organisation, run by and for those impacted by cavernoma. We work from a model of empowerment, recognising the value of our members’ lived experience to: provide mutual support; improve standards of care; and drive research into finding a cure. We are there for people at every point in their lives, providing holistic person-centred support. All that we do is underpinned by our values of being: Empowering, Inclusive, Informative, Trustworthy.
What started as a telephone support-line run voluntarily by our founder in 2005, has grown into a range of UK support services accessed by 3000+ members.
We provide a wide range of support for our members including Advice and Information (via a Helpline, an Online Community and a monthly newsletter) Peer Support (via CaverBuddies and regional support groups), Residential Weekends (separate w/e for our CaverFamilies and Adults), Therapy and Counselling (via two qualified therapists), Liaison with schools, colleges, children’s clubs/societies for our Children and Young People (CYP), workshops/meetings on a monthly rota.
About 4% of our members are parents/guardians of children with cavernoma who together form our CaverFamilies (CFs) for whom we provide support in addition to that provided to other members. These include: a series of 2-day and 4-day CF events across the UK, access to an online community of support, 1:1 support from volunteer buddies, access to practical information through booklets, and contact with clinicians and others, an Annual Forum attracting 120+ people and a monthly blog.
Specific components of the role
- Work across the charity and membership to support the physical, emotional, and social needs of people with cavernoma of all ages including children and young persons. The support will include the design and delivery of services, events, workshops and residential breaks.
- Build trusted, positive and caring relationships, helping members access appropriate advice, support and therapy.
- Build up the community, introducing new members into the group and making sure that they feel welcome, as well as working to understand all the group’s needs and requirements.
- Develop partnerships: with relevant UK organisations to mutual benefit and best practice.
- Work with our European and International sister organisations to grow and develop cross border services.
- Liaise with CAUK staff, members, volunteers and agents as required to engage them in the activities and meet the our Project Targets.
- Use a variety of media including social media, telephone, email and other means as appropriate to engage key stakeholders and liaise with key stakeholders to ensure activities are coordinated.
- Act as an ambassador for CAUK, ensuring that enquiries and complaints are properly answered, dealing with them personally when necessary.
- Observe the highest standards in relation to confidentiality, probity and the provisions of Data Protection or other legislation.
A flexible approach is needed to meet business needs with occasional work outside standard hours.
A full Job Description is included in an attached paper together with our Application form.
Please note that applications must use our Application Form and we do not wish to receive a separate CV. The Application Form contains a box for a Personal Statement which may be as short or long as you wish to make it and which forms an important part of your application. You will need to download the Application form (see the screen to your lower right) and then upload your completed form in the box provided.
The client requests no contact from agencies or media sales.