CDH UK - The CDH support charity

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CDH UK funds vital research to help improve outcomes for CDH patients

We are very pleased to be able to announce that CDH UK has agreed to fund the following research projects that have undergone a peer review process by Sparks Children's Medical Research Charity and will be fund monitored by Great Ormond St Children's Charity.

Building a functional muscle to repair congenital diaphragmatic hernia - Professor Paolo De Coppi - UCL institute of Child Health

Long term health and health service use in children and adults with congenital diaphragmatic hernia.- Dr Neil Patel - Royal Hospital for Children - Glasgow

COngenital Diaphragmatic hernia: Inhaled NO vs intravenous Sildenafil (CODINOS) trial - Proffesor Dick Tibboel - Sofia Children's Hospital, Rotterdam

Prenatal maternal sildenafil administration to prevent pulmonary hypertension due to congenital diaphragmatic hernia: final preclinical steps to a clinical trial - Professor Jan Deprest - Leuven, Belgium

The funding of this research has been made possible by the CDH UK Research Fund, which is the first of its kind for CDH. The fund is raised through the kind donations and fundraising carried out by our supporters and the general public. This is an ongoing fund to help improve outcomes for Congenital Diaphragmatic Hernia. Anyone wishing to know more about the CDH UK Research Fund, the research we are funding. or if you are interested in applying for funding, please contact .(JavaScript must be enabled to view this email address)

We would like to thank everyone involved and we are excited to be a part of this exciting research for CDH.

 

 

Date: 24 Mar 2017 - 03:26 PM

CDH UK to feature in The Guardian Newspaper Rare Disease Campaign!

We recently partnered with Mediaplanet UK on the Rare Diseases Campaign in The Guardian newspaper and online at http://bit.ly/2lF2pma

Readmotivating insight from thought leaders and learn more from patient stories on rare diseases.

Out 28th February 2017 Rare Disease Day!

Date: 27 Feb 2017 - 05:18 PM

June is CDH Awareness Month! Join in!

June is CDH Awareness month and we need your help to raise extra awareness, so that mean’s time to dig out your t-shirts, polish your badges, put on your wristbands, make sure the CDH symbol is on all your social media profile pictures and your car stickers are firmly in your windows!! Share the CDH UK awareness video that you will find on our website and facebook page….Oh and remember to try tell at LEAST one person on each day during June about CDH, because the more people that are aware of Congenital Diaphragmatic Hernia, the more support we gain and the more changes we can make:

Here are our main awareness month events, that we hope you will take part in to spread the word:

Thunderclap

Our annual Thunderclap starts on 1st June and finishes on CDH Awareness Day on 28th June with what we hope will be a HUGE Thunderclap message about CDH. This is all about getting supporters to sign up to support the thunderclap and once the target number of people have shown their support, the awareness message goes out on twitter! This is a great way to raise awareness and the link will be posted here and on our facebook and twitter feeds on 1st June.

World Record Attempt Skydive

On the 11th of June CDH UK will be taking part in a World Record attempt tandem skydive, which we hope will be covered in the media and will attract lots of attention to CDH. We are hoping to have a stand at each of the following airfields; Brigg, Nottingham, Peterborough, Swindon, Salisbury and it would be great to see some of you joining us to cheer the CDH UK skydivers on! If you would like to sponsors any of our daredevils, please head over to the Do It For Charity website and search CDH UK or alternatively search Virgin Money Giving.

Dare To Be Aware!

New for 2016 is our Dare To Be Aware challenge on Social Media. We all know how things can go viral on Social Media, so we hope that you will join in with this year’s fun………the worst that can happen is we raise a whole lot of awareness! So here’s the plan………….

Starting on the 1st June, you choose THREE victims to Dare To Be Aware! Once you have decided who they will be you post this message on your social media timeline and tag them in the post:

Dare To Be Aware of CDH? The following will not harm you in any way, but Congenital Diaphragmatic Hernia (CDH) harms lots of babies worldwide, in 50% of cases it is fatal. To find out what it is visit CDH UK. Please help to raise awareness by choosing one of the following ‘Dares’ that you must film stating ‘I dare to be aware of CDH’ before carrying out the dare and then post on Social media along with this post (copied in its entirety)  #CDH #awareness #DareToBeAware and then tag three new victims:

1.       Kiss someone on the lips whilst staring them in the eye without laughing for at least 30 seconds

2.       Impersonate someone

3.       Tell your best joke (try keep it clean!)

 

Bake 4 Babies

Back for a fifth consecutive year is our ever popular Bake 4 Babies! Organise a cake sale, get your friends, family, colleagues, whoever involved! Get raising those cakes and help raise awareness and funds too! Contact .(JavaScript must be enabled to view this email address) for a free pack.

Drawing attention to CDH

This is one for the kids! We are asking children to draw pictures of people who have helped them through their CDH journey……..this could be a Doctor, Nurse, Teacher, Dinner lady, Mum, Dad, Sister, Brother…….even CDH UK! If you are a bereaved family then siblings can join in. Once they have drawn the picture please add their name, age and who is in the picture, #CDH #cdhuk then take a good quality picture and send it by private message only to our facebook page. Also don’t forget share them on your own pages.

Name our new charity mascots

Thank you for all of the wonderful name suggestions for our new Butterfly mascots. Please vote for your favourite names during June by looking out for the voting link………names to be announced on CDH Awareness Day!

Share A Story

Please send in your stories/experiences for us to share on our facebook page throughout June to .(JavaScript must be enabled to view this email address) and please include a picture if possible.

In addition to the above events, we have other in aid of events going on around the country that you may like to attend and support. Here are a couple to be going on with:

Boxing 4 Babies

Kennedy Power will be taking part in a Boxing match at the Bradford Hotel, Bradford, West Yorkshire on Saturday 4th June to raise awareness and funds for CDH UK. You can sponsor Kennedy here:

http://uk.virginmoneygiving.com/KennedyPower

Phoebe’s Fun Day

Back again for another year, Kate Dulson has organised this fantastic family event to raise awareness and funds for CDH UK. Why not pop along and show your support and of course enjoy the fun!

Saturday 11th June 11:00 am

The Fox Inn

Bridgnorth Rd

Stourbridge

DY7 5BL

 

Date: 27 May 2016 - 11:21 AM

AGM 2016

CDH UK Annual General Meeting Sunday 8th May at 1 pm Venue The Hilton Nottingham Address: Milton Street, Nottingham NG1 3PZ, England Please email .(JavaScript must be enabled to view this email address) for further details

Date: 17 Apr 2016 - 09:24 AM

Call out for Research Grant applications goes live!

We are pleased to invite applications for Research Grants from the CDH UK Research Fund via our partner Sparks Children's Medical Research Charity, as from Friday 1st April 2016 until Wednesday 18th May 2016. Further information can be found along with application details via our Partner link.

CDH UK would like to thank all of it's supporters and donors who have helped us to raise an incredible amount of money for our Research Fund and anyone who would like to contribute by fundraising can email .(JavaScript must be enabled to view this email address) for further details.

http://www.sparks.org.uk/researchers/apply-for-funds/apply-for-a-grant-congenital-diaphragmatic-hernia/

Date: 04 Apr 2016 - 03:11 PM

Christmas 2015 Newsletter

Our Christmas 2015 newsletter is now available for download here

Date: 23 Dec 2015 - 08:32 AM

Do you want to be an official Record Breaker? Then read on….........

CDH awareness month is June and this year we thought we would go one better than shouting from the roof tops...........we thought you might like to aim a bit higher in fact around 14,000 feet higher, by jumping out of a plane to take part in our Tandem Skydive world record attempt on the 11th of June in partnership with our organisers Skyline events. This is such an amazing opportunity to do something that maybe you have always wanted to do and to raise lots of CDH awareness and funds for our cause AND be in the world record books!!!

To register and obtain an information pack, please email .(JavaScript must be enabled to view this email address) without delay! Remember places won't be avaialble for long! 

You can also register via this link:

https://www.skylineregistrations.co.uk/parachuting/booking.aspx?clientid=62165&type=block&v=3515

Date: 08 Dec 2015 - 03:33 PM

CDH Awareness Month is June!

Join us throughout June to raise extra CDH Awareness by joining in with our activities to help spread the word and educate others about Congenital Diaphragmatic Hernia and it's complications.

The Breathless 4 Babies challenge can be carried out anytime during June and is a great way to raise awareness by nominating friend on social media to join in too.......here's how:

Make a short video of yourself  undertaking an activity or sport that makes you breathless and then say 'I'm Breathless 4 Babies to raise CDH awareness' then post your video on social media and our facebook page using all the hashtags 

#CDH

#Breathless4Babies

#ChallengingCDH

If you prefer something less strenuous, then hold a Bake 4 Babies cake sale at work, at school........anywhere you like if fact. Contact us for a free fundraising pack at .(JavaScript must be enabled to view this email address)

Finally for CDH awareness Day on the 28th June we would like to make a video containing what CDH means to our families and to tell the world how it impacts on babies, children and adults and their families. Simply record your self saying just the 3 words that describe CDH to you and then send the video in to us by emailing .(JavaScript must be enabled to view this email address) or by inboxing it to our facebook page (not directly on the page time line please). We will then edit all of the clips together to make one video.

Don't forget to tweet, instagram, pin and blog about CDH all this month too! Just do whatever you can to help.

 

 

Date: 01 Jun 2015 - 08:53 AM

AGM

Public Notice

CDH UK The Congenital Diaphragmatic Hernia Charity is holding its AGM on Sunday  May 10th  at 1 pm
Venue  Leicester Forest East services 
J21 LE3 3GB
All welcome
Any questions can be made in writing to the Committee and must be received no less than 2 weeks prior to the AGM date.

Date: 21 Apr 2015 - 08:24 AM

‘Challenging CDH’ Event - a day of education and support

Challenging CDH is the first event of its kind for families and medical professionals affected by Congenital Diaphragmatic Hernia.

The day will first and foremost bring families together to offer support, but it is also a day to talk about experiences with medical professionals, to educate each other and to help to improve outcomes for CDH patients and their families and carers. There will also be activities for the children and parents/carers and the opportunity to tell CDH UK how you would like to see future support for families affected by CDH evolve and how CDH UK can develop and improve it's services to reflect this.

This should be a great day for all who attend and we also hope to have some free samples and other items available to purchase on the day. The event is free, but we have to charge for the lunch buffet and refreshments provided on the day. We look forward to welcoming you on the day!

Nearer to the event, a full itinerary will be provided.

Accomodation will be offered at the discounted price of £100 per double room and will be subject to availability.

Click here for full details and to ordere tickets: https://www.eventbrite.co.uk/e/challenging-cdh-tickets-15000232098

Date: 05 Jan 2015 - 02:09 PM

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