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Support for Families

Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.

The CaverFamilies branch of CAUK was set up in April 2012 by parents to leave a legacy of support for their children living with Cavernoma.

CaverFamilies

The CaverFamilies branch of CAUK was set up in April 2012 by parents to leave a legacy of support for their children living with Cavernoma.

Our aim is to build a strong community of support, information and education for children and young adults living with cavernoma, and their families.

Parents, carers and siblings are very much part of our Cavernoma Community; we actively encourage their participation in activities and events, and work to include them in all we offer.

Children

Our aim is to provide a legacy of support to guide our children through each stage of their journey with Cavernoma. We understand that an early, solid foundation of support in a child’s journey is paramount.

We provide children with the tools they need to adapt their lives to the often challenging needs of their condition. We believe in making this as positive an experience as it can be and aim to achieve this by offering an extensive range of support services, listed below.

Teen & Young Adult Support

At CAUK we understand that the transition to adulthood can be particularly challenging for teenagers living with Cavernoma.

We know that thinking about your future with Cavernoma might be daunting and overwhelming, but with our support we’ll help you to feel confident and secure about the next steps.

Support for our Families

We provide a broad range of support for those who need it, including;

  • Direct support in schools, colleges and universities. We want to help your institution or organisations support you better whilst you are in their care. We offer 1:1 training, presentations, teacher conferences and printable resources to provide helpful information quickly. We will personalise our information bundle to suit your child’s individual needs.
  • 1:1 and small group therapy with our trusted and experienced therapists. All our therapists have experience working with young people and families affected by cavernoma.
  • Residentials and weekend breaks. We organise various events throughout the year so that young people living with a cavernoma can meet and socialise with others their age who know and understand what they are going through. Our aims is that the friendships and support networks formed in this space continue into adulthood. All events are free of charge, fully funded by our charity and donors.
  • Social media support. We provide online support for our young people by helping them to raise awareness/fundraise and showcase their talents on all social media platforms.
  • Direct support for new employees and apprentices. We want to help your employer support your better at work. We offer 1:1 training, presentations and printable resources to provide helpful information quickly. We will personalise our information bundle to suit your needs.
  • Mentoring and Caverbuddies. If you need longer-term support, or if you would like to help other young people who are struggling our Mentor or Caverbuddy Program could be for you

Frank Gent

CaverFamilies wouldn’t exist as it does today without the support and influence of the late Frank Gent.  Frank, a CAUK Trustee and member with a cavernoma himself, was a key player in setting up CAUK’s events for children affected by cavernoma and their families.

In 2013 Frank organised CAUK’s very first residential weekend at Butlins in Skegness as a free event for families – a very valuable tradition which CAUK honours every year.  Frank paved the way for the development of a wider support service for children and their families, now known as CaverFamilies.  He was a wonderful selfless friend to CAUK. 

Get in touch with us

available from 10:00 – 16:00