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June is CDH Awareness Month – Join in June 4 CDH!

June is #CDH Awareness Month and is an opportunity for you to make an impact on helping to improve outcomes for CDH and Eventration patients and their families and to help raise much needed funds to help support families emotionally and practically.

Here is what you can do to help this June!

First off is the official hashtag which is #CDHTheHoleStory….. we want to tell the whole story this June about CDH…..what may begin as a hole in a diaphragm can lead to a whole set of challenges and life threatening issues. Raising awareness isn’t just about what the condition is, but what it means to be a patient, a parent, a carer, bereaved and the challenges it can present for everyone affected including medical professionals and researchers. So, we wanted to convey this in our hashtag, which is a play on words, but a brilliant one we think and one that we hope will raise lots of awareness now and in the future. We have made it easy for you share this and to add it to your Facebook profile picture by creating a facebook frame that you can add via this link

We will also be releasing two special videos in time for CDH Awareness Day on 28th June;

‘When I grow up’ – This we hope will be a video to make you smile and to make people want to watch it as the stars of the show will be children affected by CDH. However, despite the comedy factor, there will be a serious message too and that is to highlight the need to enable children to be as healthy as possible given their difficult start in life and to receive appropriate and timely care for ongoing issues and a follow up care plan no matter where they live. We also will focus on transition of care with an emphasis on the need for this to be communicable and as smooth as possible from NICU to local care and from Child services to Adult services. Also to encourage and support children and young adults to be confident about their bodies and any challenges that they face, to allow them to fulfil their aspirations and dreams and to live their best life. We also aim to highlight the challenges facing adult patients by keynote speaking and hosting a workshop later in the year.

‘Forget Me Not’ – to highlight the challenges faced in bereavement from transition of care from maternity services to local care and the anxieties and challenges faced immediately afterwards and in the years following bereavement.

We will also be hosting a podcast to released on Awareness Day and trying to secure some celebrity tweets and interviews with radio etc.

For any questions please email

Join in with some awareness activities!

‘CDH Is No Joke!‘ – Join in our Jokeathon on 28th June to help encourage the public to learn more about #CDHTheHoleStory. We will be asking you to post your best joke on our Jokeathon page. We will then ask you to add the laughing face symbol to the joke that you like the most, The one that receives the most laughs or likes is the winner and will receive a medal and an amazon e-voucher. Anyone can join in, so look out for the event page coming soon!

Share all of our social media posts and stories and please send in anything that you think will help with #CDHTheHoleStory such as challenges you or your family have faced by emailing

Now for the fundraising bit!

Fundraising is crucial to making things happen and without it our work simply can’t happen, so please join in with raising some funds this June. You can come up with your own ideas or simply use ours. The contact email is

Coffee & Cake 4 CDH – Organise a coffee morning and get people to bring cake, charge a ticket fee or ask for donations and then sit back and enjoy! We will supply some balloons, a host t-shirt, posters, stickers for lapels or bags and CDH info leaflets and all of the details to send in your funds raised.

Bake 4 Babies – Similar to the above but you are hosting a cake stall and inviting family and friends to donate cakes and goodies to sell on your stall to raise funds for our cause………..really couldn’t be easier and fun for all the family!

Jog 4 June 4 CDH – Back again for another year is the event to get you moving! If you don’t fancy coffee mornings or baking then maybe this is up your street instead. This is basically a marathon in a month

Forget Me Not Fundraising

We launch our Forget Me Not Memorial Fundraiser on 1st June, which gives bereaved parents the opportunity to set up a fundraising page in memory of a loved one. The link can be found here:

In addition, you can purchase awareness items via our ebay shop and we have some great new additions throughout June.

For any enquiries or questions about fundraising please email