Help babies with serious heart conditions

Tiny Tickers is continuing to work hard to improve the detection, diagnosis and care of babies with congenital heart defects in the UK. We’re only able to do this work because of the generosity of our supporters, so thank you.

It is an exciting time for the Tiny Tickers. I've recently been appointed as the charity's new Chief Executive. I've joined from the media sector, and have experience at trustee and board level within the charity sector, including with other heart charities and as a committee member for BBC Children in Need. I'm the father of a CHD patient – my daughter has had open heart surgery – and I have first-hand experience of the benefits of a prenatal diagnosis.

We are continuing our core work on training sonographers in NHS hospitals in the UK, and we have provided expert training in hospitals in Scotland and Manchester in recent months.

We are playing a key role in influencing NHS England’s new review into congenital cardiac services in England, including as part of the patient and public engagement group alongside other relevant national and regional charities and support groups. We are delighted that NHS England have recognised the need to improve prenatal and newborn detection rates as a key objective of the new review, and will make sure Tiny Tickers’ ambitions in this area help shape the outcome of the review.

We have been liaising with Public Health England – who monitor screening services in the UK – to discuss further ways we can work together. We are developing projects around information for newly diagnosed families and further training initiatives.

We are playing an active part in promoting the public consultation into pulse oximetry. We are continuing to support the introduction of this test of oxygen saturation levels for all newborn babies – a simple test that can help highlight the signs of possible CHD. To take part in the consultation, go to www.screening.nhs.uk/congenitalheartdisease.

We continue to be moved and inspired by the experiences of having a baby with CHD that our supporters share with us, and by the phenomenal fundraising efforts of many supporters. We are developing our range of challenge events – from British 10k and Great North Run places to the Big Heart Bike Ride in India planned for 2015. Special mention must go to Ed White, who is taking on the Marathon des Sables – the world’s toughest footrace over six days across the Sahara desert – to raise funds for us.

We have many more initiatives and projects to come as we move into 2014, which promises to be an exciting year for us. Please feel free to follow us on Facebook and Twitter (@tinytickers) or via our website – www.tinytickers.org – and to give us feedback on info@tinytickers.org.

Many thanks for your support,

Jon