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 later confirmed as having inherited the condition, she found that many families were not being advised of the need for regular heart checks. She 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 and has grown to provide information and much needed support to those living with a cardiomyopathy around the world.
Still the leading 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 was that those at risk should be provided with easy access to heart checks 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 a cure will be found. Until that time arrives it was Carolyn's wish that the CMA will help those in need of information and support, wherever they may be.
On Tuesday the May 21st, 2002 Carolyn sadly died following a lengthy illness.
Carolyn was someone who made a difference. Despite the fact that she had hypertrophic cardiomyopathy, her first and last thoughts were always of others. Her priority was to find practical ways to help people and improve the quality of their lives. 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.
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