CaverFamilies

CaverFamilies 2016

CaverFamilies 2016

CaverFamilies events and meetings are exclusively for young people who have, or have had, cavernoma; their parents and siblings.

CAUK organises various events throughout the year to give those children and their families the opportunity to connect and find out more about the condition. These events are vital in helping children and their families feel more empowered to cope with an often difficult condition through increased knowledge. You can read a story here about one of our CaverFamilies members, Fraser, and how CaverFamilies’ events provide support.

Study Days

In March 2015 the Royal Manchester Children’s Hospital and CAUK held the Manchester Study Day funded jointly by CAUK and the Big Lottery. While the parents listened to talks on cavernoma by a neurologist, geneticist, neurosurgeon and  neuroradiologists from the Children’s Hospital, the children were provided with entertainment in an adjoining room. Parents and affected children were offered free travel to Manchester, free overnight accommodation, and meals.

Young Persons’ CaverHub

The Young Persons’ CaverHub (YPC) has been held at the National Hospital for Neurology and Neurosurgery, London for three years. Paeditrcians with specialist knowledge of cavernoma give presentations for parents and children are provided with entertainment in an adjoining room if they wish. One example of a Young Persons’ CaverHub was a talk by Dr Sanjay Bhate, consultant paediatric neurologist, from Great Ormond Street Hospital who presented a lecture on ‘Children and Cavernomas’. This event was funded by the Roald Dahl Marvellous Children’s Charity. Past presentations have also been made by Contact a Family and events have been held at the London Aquarium and the Science Museum. CAUK are fully committed to continuing its support of this important children’s event.

Residential Weekends

CaverFamilies 2016, sponsored by BBC Children in Need

CaverFamilies 2016, sponsored by BBC Children in Need

CaverFamilies Residential Weekends have been held every year since 2013 and are for families in which one or more children have, or have had,
cavernoma, their parents, and siblings – not just those affected directly with cavernoma. This Weekend provides an opportunity for families to get together and share experiences in places that provide a wide range of facilities for children of all ages and their families. Usually financed through the generosity of CAUK and its fundraisers, the 2016 CaverFamilies Residential Weekend at a Yurt Farm in Herefordshire was financed by Children in Need.  A report on the aims and outcomes of a typical residential weekend are available to view here.

Children’s Information Video

Our Big Lottery grant and CAUK member fundraising enabled us to produce this information video in 2015 to help children affected by cavernoma to understand their condition.

 Children’s Information Booklets and Folders

CAUK has produced two children’s information booklets (which you can download below) with funding from The Hedley Foundation.  Free paper copies can be ordered from the CAUK office. We have also produced Information Folders for young children. They contain a DVD of the children’s information video, information booklets along with a personal information booklet.

Each new UK member will receive an information pack, and you can sign up to become a member of CAUK as a parent or guardian of a child affected by cavernoma for free.

booklet 1.indd

For children aged 5 to 11 years

booklet 1.indd

For children aged 12 to 16 years