Help babies with serious heart conditions

by Tiny Tickers
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Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions

Our work to improve the detection, diagnosis and care of babies with congenital heart defects in the UK continues.

We are continuing our core work on training sonographers in NHS hospitals in the UK, with most recently training being provided in the north west and the midlands.

We are delighted to report Public Health England has agreed a pilot scheme for pulse oximetry testing. This is a simple, effective test that can pick up signs of heart defects, and the pilot will look at the benefits of all newborns being given this test before leaving hospital. Around 1,000 newborns head home each year with their major heart defect not having been spotted, so any efforts to improve this are to be applauded. Our key focus is on improving prenatal detection, and feel that pulse oximetry testing could be a vital safety net for those occasions when defects are missed during pregnancy.

We are continuing to play 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. NHS England have recognised the need to improve prenatal and newborn detection rates as a one of the six objective of the new review, and we are working with those leading this objective to make sure the patient and carer voice is heard.

We are developing projects further training initiatives, and an awareness campaign for mums-to-be. We are taking on more staff to help achieve this growth - two interns will be joining us for the summer period under a scheme run by the University of Leeds careers service; and we are currently adding for a part-time fundraiser to also join the team.

We continue to be moved and inspired by the experiences of CHD that our supporters share with us, and by the phenomenal fundraising efforts of many supporters. In recent months we have seen 22 supporters conquer the Yorkshire Three Peaks, plus fundraisers running various races on our behalf. We'll have teams of runners in the British London 10k, Great North Run and Run to the Beat events in coming months. One supporter, Nicole Richardson, will be climbing Mount Kilimanjaro, the highest mountain in Africa, to raise funds for us!

In our last report we mentioned fundraiser Ed White, who took on the Marathon des Sables – the world’s toughest footrace over six days across the Sahara desert – on our behalf. We're delighted to report that Ed completed all 155 miles of the race and, together with colleague Charlie Prentis, raised a phenomenal £30,000 to be split between Tiny Tickers and Charlie's charity, Parkinson's UK. Hats off to both - what an achievement!

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. We’re only able to do this work because of the generosity of our supporters, so thank you.

Many thanks for your support,

Jon

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Our work to improve the detection, diagnosis and care of babies with congenital heart defects in the UK continues.

We are continuing our core work on training sonographers in NHS hospitals in the UK, with most recently training being provided in the north west of England.

We are continuing to play 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 one of the six objective of the new review, and we will be part of a working party to explore the issue in more depth.

We see this new review as a superb opportunity to make a real difference to detection rates. For example, we have been calling for a national database of screening outcomes (currently only half the UK is monitored and that is across a number of regional registers). A database of this type would enable targeted training where it is needed the most. At the latest meeting with the NHS England review team, they intimated that the review was in favour of just such a database.

We are developing projects further training initiatives, and an awareness campaign for mums-to-be.

We continue to be moved and inspired by the experiences of 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.

In our last report we mentioned fundraiser Ed White, who is taking on the Marathon des Sables – the world’s toughest footrace over six days across the Sahara desert – on our behalf. Ed is now well into his training, with the event fast approaching in April. We wish him all the best and will report back on his efforts!

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. We’re only able to do this work because of the generosity of our supporters, so thank you.

Many thanks for your support,

Jon

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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

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Hello from Tiny Tickers!

Since our last news letter, we have received many generous donations - which are really appreciated and vital to our ongoing work.  Thank you for you continued support.

And another very big thank you goes out to our wonderful London 10k runners, who raised over £4,500 from the run in July. 
Link - www.tinytickers.org/content/run-team-tiny-tickers

Running for charity has become a very popular way to show support for a cause, perhaps remember a loved one, and get others involved - which also helps to raise awareness.  All this is vital to a small charity like Tiny Tickers, as we really need people to help spread the word, so if you feel inspired to run or support any event - we would love to hear from you.

All money raised for the charity - from events, activities or personal donations - is used to provide a better start for babies with congenital heart disease, before they are born.  Tiny Tickers is working to improve early detection, so that more heart babies receive the care they need, avoiding unnecessary illness and suffering.  Early detection includes improving screening before birth and creating awareness of the signs of undetected heart conditions at home and in the community.

Thank you for your kindness in helping to support our vital programmes ... and we hope that the year continues to be kind to you!

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Ellie
Ellie

Greetings from Tiny Tickers!

2013 has already been a great year for the charity and we have been overwhelmed by the support we have received.  Thank you to everyone for your continued generousity - we are very grateful for your kindness.

We have some fantastic fundraisers - see our News page for all the latest: www.tinytickers.org/news

And great support and sharing through facebook: www.facebook.com/tinytickers

And some intrepid runners - www.tinytickers.org/content/run-team-tiny-tickers

And more families have shared their personal experiences of heart problems: www.tinytickers.org/content/experiences including Ellie's story (whose picture is shown)

And, of course, very generous donations from you all.

Which has allowed us to do plenty of training and campaiging to improve the early detection of heart defects - and help many more babies have a better start in life.

So, thanks again for your continued support. We wish you all the best for the rest of the year.

Links:

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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$21,290 raised of $25,000 goal
 
384 donations
$3,710 to go
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