Down's Heart Group

Down's Heart Group was founded in 1988 by Linda Walsh, mum to Katy who was born in 1984 with Down’s Syndrome and associated congenital heart defects.

Katy Walsh
January 15th 1984 - November 21st 1986

Linda brought together a group of fellow parents with the aim of providing support and information by sharing individual experiences and to encourage research into the heart conditions that are present in nearly 50% of babies born with Down’s Syndrome. In 1992 the group became a registered charity and over the following years it continued to support families by way of a telephone helpline, newsletters and conferences, also working alongside other linked charities to help reach as many people as possible and let them know they were not alone. As it grew, the group adapted to many changes both in general technology and in advancements in treating congenital heart conditions, but as access to information and support became more accessible through online access, the contact from families decreased.

In 2018 the decision was made to make the staff redundant and reframe the charity as one that was trustee led. However, the subsequent reliance solely on a small number of volunteer Trustees proved difficult to sustain through a period of illness and very sadly losing a longstanding and much respected Trustee in 2024, so in early 2025 the difficult decision was made to close the charity. Following on from this, after a great deal of consultation, the Trustee Board agreed that in line with the Dissolution Clause in the Down’s Heart Group Constitution, the remaining funds would be donated to the Crick Institute to be used specifically for research in the Down Syndrome laboratory which is looking at how genetic changes cause different aspects of Down syndrome, including the heart defects. You can read more here: Down Syndrome Laboratory at Crick Institute

We have also agreed to allow the Down's Syndrome Association to utilise and update our Information Sheets which contain simple diagrams and non medical language, to ensure that these remain available to help parents understand their child’s heart condition and empower them in making decisions about treatment.

We would like to take this opportunity to thank everyone who has been involved over the past 37 years - patrons, medical advisors and other medical professionals, associated groups, supporters and most of all the families who have shared their stories and supported each other in so many ways.