Project information

Children's Cardiomyopathy Service

Cardiomyopathy is the most common medical cause of young people dying suddenly. When children are diagnosed, their families can be overwhelmed. This project will provide support and information to help children and their families live with, rather than in fear of cardiomyopathy.

September 2015 - September 2016

Charity information: The Cardiomyopathy Association

The Cardiomyopathy Association logo
  • Need


    Families with a child affected by cardiomyopathy are often anxious and frightened when they come to us, because they aren't getting the accurate information they need to help them understand a serious, genetic heart condition. We have helped hundreds of families over the last ten years but we need to reach thousands more, who are not getting the support they and their children need.


    Our pages about cardiomyopathy in children are the second most visited area of our website, receiving over 15,000 unique page views in the past year. We also provide booklets on the condition for families and one designed for a younger reader. We have recruited a specialist children's nurse thanks to an earlier appeal to supporters, and they will work alongside a Children and Young Person Officer to expand our service and reach more families and children across the UK.

  • Aims

    Aim 1

    Reach more families and children affected by cardiomyopathy to give them information and support.


    » Employ a Children's Officer to make connections with paediatric heart centres, schools, GPs and families.

    Increasing numbers of families with an affected child connected to us, and their evaluation of our support in the form of a survey

  • Impact


    There are lots of questions and worries throughout childhood and teenage years and into adulthood. This project will give families and children the information about their condition so they are not frightened throughout their childhood, and it becomes part of their life rather than dominating it. Success will be demonstrated over time, through feedback from families and children, and their continuing engagement with, and support for, the charity.


    We have expert medical advisors and are already providers of information and support to adults affected by cardiomyopathy. We will have a new Children's Nurse working alongside the Children's Officer who is a specialist in paediatric cardiomyopathy and has worked for Great Ormond Street Hospital for many years. We are confident of continued funding, as those families we have helped in the past are passionate supporters of our work.


    We want to engage donors with the difference their gifts make, so we will provide stories about individuals the project helps, as well as overall trends and the wider impact of the project. We will do half yearly updates but are also very happy to speak to donors individually if appropriate.

  • Budget

    Budget - Project Cost: £47,000

    Loading graph....
      Amount Heading Description
      £12,000 Children's Nurse 1 day per week of helpline advice from a specialist cardiomyopathy children's nurse
      £30,000 Children's Officer Engage with young people and their families, raise awareness of the service
      £5,000 Marketing and promotion Promoting our information, postage and travel to meet families

    Current Funding / Pledges

    Source Amount
    Previous appeal £12,000 Guaranteed
    Genetic Disorders UK £10,000 Guaranteed
  • Background


    UK-wide. Our office is in Buckinghamshire, but the nurse and officer may be home-based. We support families across England, Wales, Scotland and Northern Ireland


    Cardiomyopathy affects at least 1 in 500 people. This project focusses on children where the prevalence is lower but the impact much more severe. As a genetic condition, when a child is diagnosed with cardiomyopathy the implications can be serious for siblings, parents and other close relatives. This project will help any family within the UK and we estimate at least 200 families will be helped in the first year.

  • Why Us?

    Why Us?

    We are the expert charity for cardiomyopathy, with advice from leading cardiologists from London's Heart, Brompton and Great Ormond Street Hospitals. We already provide information on children and cardiomyopathy through our website and booklets, and this project is a natural and much needed development of that work. We are trusted by the families we have helped, and recognised by the medical profession for the excellence of our conferences.

    Read more about the Charity running this project.


    Robert Hall

    Medical Director and former cardiomyopathy specialist nurse, leading the project at strategic level and connecting with cardiologists


    Cardiomyopathy Children's Nurse - providing advice and information to families with a child affected by cardiomyopathy


    Children's Officer - leading the outreach and development of our children's work to reach more families


Cardiomyopathy in children family pack

I keep an eye out on an hourly basis - it will mean a life of monitoring.

Sarah Lofthouse Bishop - mother to Marty