30 Years Of Cardiomyopathy UK

It all started with a woman who wanted answers

In 1977 Carolyn Biro, a mother of two young children, was first diagnosed with hypertrophic cardiomyopathy. At the time, there was no patient information available on her disease, she wanted answers. Her children were later confirmed to have inherited the condition. Carolyn was shocked to find that many families were not being told of the need for regular heart checks. She committed herself to making a difference and raising awareness of the condition.

Through her dedication, drive and determination to help others, Cardiomyopathy UK was founded in 1989. Initially called the Hypertrophic Cardiomyopathy Association and later The Cardiomyopathy Association, we have grown to become the leading charity for cardiomyopathies and myocarditis within the UK and recognised around the world for the quality of our information and support.

Carolyn sadly died following a lengthy illness in 2002 but left a powerful legacy of a charity determined to continue her commitment to a greater understanding of, and better treatment for heart muscle disease. Practical advice from her kitchen table was where we began, and today Carolyn’s vision remains at the core of our work. Her drive and passion still helps to propel the charity forward.

You can find out more about what the charity has achieved last year here.

Throughout 2019 we will be celebrating our 30th anniversary and dedicating the April edition of our My Life magazine to this landmark year. Inside we’ll be looking back at how far clinical intervention has developed for people with cardiomyopathy over the past 30 years - including stories from service users from across the decades. We'll also be thinking about where we’d like the charity to be in the next 30 years for future generations.

We will continue to expand and improve our services across the UK so that more people affected can get the support and information they need when they need it most.

We invite all of our supporters and fundraisers to get involved to make 2019 a year to remember.