The
Cardiomyopathy
Association

Carolyn Biro

Founder - Carolyn Biro

In 1977 when Carolyn Biro, a mother of two young children, was first diagnosed with hypertrophic cardiomyopathy, her initial fears soon turned to bewilderment on finding that there was no patient information available on her disease. When her children were subsequently confirmed as having inherited the condition, she found that many families were not being advised of the need for regular heart checks and decided to commit herself to making a difference.

Through her dedication, drive and determination to help others, the Cardiomyopathy Association (CMA) was founded in 1989 in the UK by Carolyn and has grown to provide a worldwide information service, and much needed support to those living with a cardiomyopathy.

Still the foremost patient-based authority on this heart muscle disease, the CMA has helped organisations in the USA, Australia, Canada and Ireland to develop their own national support groups.

Carolyn Biro’s vision for the future was that those at risk should be provided with easy access to heart testing at centres of excellence and, if diagnosed with the condition, should be managed and treated by experts in the field of cardiomyopathy.

With recent advances in genetic research, the hope is that as medical science progresses a cure will be found. Until that time arrives it was Carolyn's wish, and all who are connected with the production of this site, that it will serve to help those in need of information and support, wherever they may be.

On Tuesday the 21st May, 2002 Carolyn sadly died following a lengthy illness.

Carolyn was someone who really made a difference. Despite the fact that she had hypertrophic cardiomyopathy, her first and last thoughts were always of others. Rather than complain of what wasn't being done, her priority was to find practical ways in which people could be helped and the quality of their lives improved.The organisation she started from her kitchen table now helps thousands worldwide and will continue to grow as a testament to her desire to light a candle rather than curse the darkness.

The 'Carolyn Biro Lecture' is a prestigious annual event at the Cardiomyopathy Association's national medical conference. The lecture pays homage to Carolyn's legacy of improving awareness and understanding of cardiomyopathy.

Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.