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How we’re spending your donations – an update

We want to thank all of you for your generosity and encouragement over the past few months. We thought you might like an update on how your support is helping us in these difficult times. While some of the way we work has altered due to the coronavirus, our values and our mission remain the same.

A huge part of the work that you help to fund is the provision of support across the UK. Since the very start of the coronavirus outbreak, your money has helped us to ensure we can respond properly to parent enquiries and put out up-to-date information when people need it the most. CLDF has been providing regular communication on guidance and explanations of government briefings, as well as ongoing updates and blogs to support with various issues. Behind all of this, you have enabled other support work to continue too – from help with DLA applications to responding to liver-related health concerns.

In mid-March we sadly had to suspend our clinic visiting programme but are still engaging with new families via our website. We are also still sending information to clinical colleagues who are referring to it in their communications with patients and parents.

We can’t currently meet with our existing families and young people, but that is where Zoom has come in – family and young people’s sessions have been running online including a UK-wide session and specific sessions for Scotland, Northern Ireland and Wales. Our HIVE and HIVE+ groups are also still running with the aid of some fab HIVE ambassadors that you have helped to train.

Both our staff and young people were very disappointed that Breakaway (our annual residential for 12-15 year olds) had to be cancelled during May half term. Not to be put off, the support team were able to arrange a virtual version. It even included a CLDF-style ‘bushtucker challenge’ which saw Head of Support Michelle and some of our brave young people get up close and personal with flavoured crickets!

Of course, support is closely linked to our information provision. Thanks to your generosity we have still been able to send out literature where it is needed, supplying nearly 1,000 leaflets to hospitals and over 200 to individuals so far this year. We continue to support maternity ward and neonatal wards in providing Yellow Alert leaflets to new parents and have sent out more than 4,000 Yellow Alert resources over the past 5 months.

Work on research has slowed but has by no means stopped. We have been sharing news about research opportunities and gaining updates from CLDF-funded researchers to bring you the latest. Watch out for more coming soon. Parent and patient contributions and involvement remain invaluable.

Finally, our voice work is also still going in earnest.  As always you, our supporters, are at the very heart of this. Through sharing our links via social media and promoting information about us you have helped to keep a high profile on the things that matter. A lot is going on behind the scenes but your voice, concerns and queries help us to represent what is important to you.

These are just some of the things that you are helping us to achieve. We want you to know that your support is truly valued and appreciated by the whole team at CLDF, now more than ever. Although we have found ways to adapt to the new situation, things are still very difficult for the charity. We desperately hope that we will be able to honour your commitment by being here for you for many years to come.

Alison Taylor Signature

Alison Taylor (CEO) and the whole CLDF Team

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