CARDIOMYOPATHY UK &
THE FIRST YOUTH PANEL
Cardiomyopathy UK and the first Youth Panel.
In June 2019, we were delighted to announce that we have teamed up with Cardiomyopathy UK, who are committed to providing support to individuals, families, children and young people affected by Cardiomyopathies.
Over the past two years they have focused on developing and extending clinical, emotional and peer support to children and young people who have a diagnosis themselves, or have a sibling, parent or close family member affected by cardiomyopathy.
In January 2019, the charity commenced project work funded for three years by BBC Children in Need to improve services for children and young people up to the age of 18.
This funding allowed the Youth Panel, made up of twelve young people aged between 16 and 25 who all have personal experience of a cardiomyopathy, to be formed. Their aim is to contribute to and shape the support and services for young people affected by these conditions and they are committed to making real change for children and young people through their work.
At Max’s Foundation, this is obviously incredibly important to us and felt this was a project that we absolutely wanted to get involved with.
We were thrilled that our youngest Trustee and Max’s sister, Molly, was invited to join the panel and become an integral part of this incredible venture.
Although the Panel and its services are funded by Children in Need, a real gap was identified for a manager to coordinate everything (which the original funding does not cover).
Whilst the Panel work predominantly with the Head of Services at Cardiomyopathy UK, supported by the Information and Education Manager, it became clear that given the lack of time the aforementioned post holders have within their wider roles, the recruitment of a Youth Support Manager was vital to ensure any child accessing the charity’s services is fully supported and their diversity of need accurately reflected.
At Max’s Foundation, we have committed to a 3 year funding of the Youth Support Manager at Cardiomyopathy UK to focus solely on this. This manager will work directly with the Youth Panel, the existing networks of paediatric and adult clinicians (to include mental health practitioners), and all Youth Panel service users, educators and wider groups invested in supporting them.
We have a very specific effort. To help children with
hypertrophic cardiomyopathy and support their families.
We will develop screening for hypertrophic cardiomyopathy,
and we will do so by bringing communities and families together.