CDH UK welcomes all families to it's annual Family Get Together in Chesterfield, Derbyshire hosted by the Hills Family. This is the first Get Together of 2013, with others being announced shortly. Our Family Get Together's are an opportunity for families affected by CDH to come together for a chat and a coffee to share experiences and to offer support to each other. We also have a workshop session during the afternoon whereby we discuss a topic relating to CDH.

This is an informal and relaxed day and there will be activities and a play area for children. Light refreshments will be provided and awareness items will be available to purchase on the day. There will also be information available about fundraising for CDH UK.

We would love to see you this year at one of our Get Together's! To register please email .(JavaScript must be enabled to view this email address)

The production of our Winter newsletter is well under way and we are looking for stories and features from our families and supporters. Maybe you would like to share your CDH pregnancy & birth experience, or tell us how your fundraiser was organised and how it went on the day. If you have a CDH survivor maybe you would like to share how you have coped with any ongoing issues or share any milestones that they have reached. If you sadly lost your baby or child, how are you doing after your loss and how has re-building your life been......how do you remember your little one? You could tell us how CDH UK has helped you?

Whatever your story, each one will inspire others, so send it in to .(JavaScript must be enabled to view this email address)

Jan Deprest is a Professor of Obstetrics and Gynaecology at the University Hospitals Leuven, in Belgium. He trained in fetal medicine in Leuven, Leiden (Holland) and London (U.K.). He established the Eurofoetus consortium, which is dedicated to the development of instruments and techniques for minimally invasive fetal and placental surgery. That group earlier demonstrated that laser surgery in identical twins with “twin-to-twin transfusion syndrome” yields the best outcome. The Leuven Fetal Medicine Team dedicated part of their research to the study of antenatal treatment of congenital diaphragmatic hernia, eventually developing a percutaneous method for fetoscopic placement of a balloon into the fetal trachea (“FETO”). A European task force with the University of Barcelona (Hospital Clinic) and London (King’s College Hospital) was set up and by 2009 that consortium could report on over 200 such procedures. Also clinical studies were performed to define the survival chances of fetuses with isolated CDH using prenatal imaging methods such as ultrasound and MRI. FETO proved to be safe to the mother and fetus, and the initial data suggest it may improve survival and morbidity. In order to test the hypothesis that FETO is unequivocally leading to improved survival rates and/or may lessen morbidity in survivors, they have set up the TOTAL (Tracheal Occlusion To Accelerate Lung growth)-trial. Prof Deprest is currently the academic chair of his Department and active in the wider field of fetal lung development. He has published over 230 scientific papers.

We are extremely pleased and proud to present to you the very 1st edit of our CDH Awareness Film. We are aware of a couple of errors and it is not the finished article. This film has taken an awful lot of time, effort and thought and we would like to show it to you all before it goes to final edit, so that we can have your feedback. The film lasts approx. 13 minutes and will be our Charity's main awareness film. There will be another film released at a later date focusing more on the medical overview of CDH. Thank you so much to everyone involved in the making of this film. The song accompanying the photo montage at the end was written and performed by A CDH Auntie especially for you all and is called 'My Child'.......We hope you enjoy this 1st edit as much as we did....We dedicate this film to ALL families, babies, children & adults affected by CDH ♥

http://youtu.be/qdGJmg3d7Jc

Without the support, dedication and hard work of our fundraisers our charity could not exist. Our supporters continue to amaze us! People who never thought they would be able to run a mile are running 13 and 26 miles! People who never baked a cake are baking dozens! People who have never organised a birthday party are organising Balls and themed nights! People who don't like travelling in planes are jumpimg out of them! People who have little time to themselves are making time to help our cause! You are all CDHeroes whether you walk, run, sell, bake, dance or jump out of planes and you all not only raise vital funds for our registered charity to enable us to help families and further our aims & objectives, but you are helping to raise awareness too!! Every single fundraiser is important to us and is greatly appreciated and we would just like to say a MASSIVE THANK YOU! If you would like to fundraise for CDH UK or tell us about your plans to fundraise please contact us by emailing .(JavaScript must be enabled to view this email address)

To keep up to date with our past and upcoming fundraising events please click on the link https://www.facebook.com/CDH.UK.SUPPORT/events

We are very honoured to have Professor Paul Losty MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) as a Medical Patron and member of our Medical Advisory Panel for our charity. 

Paul Losty is a Professor of Paediatric Surgery at Alder Hey Children's NHS Foundation Trust and the University of Liverpool. Professor Losty trained in General Surgery and Paediatric Surgery in Dublin - Ireland, Boston - USA  and Liverpool - England. Over the last 20 years Professor Losty has successfully cared for many babies born with CDH.  Working with a team of academic surgeons and scientists at the University of Liverpool, he has devoted a considerable part of his professional life to research new ways to better understand and treat the condition. Professor Losty established the 1st UK multidisciplinary follow up clinic for CDH and every month at the Liverpool Womens Hospital with NHS partners / fetal medicine specialists counsels and advises many families affected by CDH.  Professor Losty is a frequent keynote speaker at many national and international meetings. He has authored over 100 peer review publications including original articles and textbook chapters relating to CDH.  Professor Losty with a working party group of surgeons , obstetricians , fetal medicine specialists,  nursing staff, CDH UK and parents co-led the development of the NHS FASP care pathway for CDH.

Here at CDH UK we know how important it is to find the cause (or causes), prevention and improved treatment and management of Congenital Diaphragmatic Hernia and is one of the main aims and objectives of our charity.

Research and study in most cases can cost many hundreds of thousands of pounds and it is therefore extremely important for us to build on our Research Fund so that we are able to contribute to the studies/research programmes that we feel are worthwhile.

Our current research fund stands at just over £20,000 and our target is to reach at least £100,000. This is currently made up from funds raised from our annual charity ball and from donations and fundraisers where it has been specifically requested that funds are used for this purpose.

If you are a researcher and would like to talk to us regarding funding for study or research relating to CDH please email .(JavaScript must be enabled to view this email address)

Join us in our National campaign to raise awareness of CDH by 'popping' up posters in public places local to you.

There are lots of Social network sites that can act as a great platform to raise awareness of CDH, but there are lots of people out there who are not users of these sites, or visit them infrequently. There are also people who choose not to use the internet, or don't have access to it. Posters are a great way to get a message out there and can be displayed in places where large numbers of people pass through or visit to allow as much exposure as possible to be achieved. They are used by many charities and have been done for many years to gain support & raise awareness of their cause, so naturally designing our own poster was always on our 'to do' list and with the amazing amount of fundraising that has been done by you this year it has made this possible - so well done!!

Some examples of the places you can put up the posters are:

Community Centres

Public libraries

Workplaces

Information centres

Activity & Leisure centres

Childrens play centres

Mother & baby groups

Childrens Nurseries

Hotels

Petrol stations

Cafes

And there are many more.

Of course we always advise that you request permission prior to putting up the posters, as some venues require Head Office permission to allow posting of any kind and some may not allow posting at all. The Proprietor, Manager or someone in authority should be able to help you.

The poster design is bright & therefore eyecatching, it is A3 in size and has a matt sheen finish. It is representitive of the approximate 1:2500 babies diagnosed with CDH and each baby is represented with our logo (of which there are 2500 we are told!) the 1 baby diagnosed with CDH is depicted in white, to stand out from the rest and this is therefore the '1' in 2500. The writing is set inside a circle pointing to the white logo, which is representitive of a hole in the diaphragm and the wording focuses on the message that CDH is fatal in some cases, can lead to long term suffering for some survivors, that it could affect them or their family and that although described as a rare birth defect, it actually is more common than people perceive it to be. The call to action from the poster is that the viewer visits the CDH UK website to find out about CDH and informs them that this will help babies & families. How will the viewer help? by hopefully telling others about CDH, donating & fundraising. The more people that know about CDH the more chance we have of campaigning for further research into the cause, prevention & better treatments of CDH.

To volunteer and to obtain your free posters, please contact .(JavaScript must be enabled to view this email address) referencing your email 'Poster Campaign' and provide us with your full address details. The posters are sent free postage in a tube containing 5 no. posters, but if you require more just let us know. Remember also that you can share this poster around facebook to raise even more awareness and you can ask your family & friends if they would like to 'Pop Up A Poster' too!

Further to our recent announcement informing you of our application to the Charity Commission to register a new name for our charity, we are pleased to be able to inform you that the register has been updated accordingly and our new name is:

CDH UK - The Congenital Diaphragmatic Hernia Charity 

The change will not show on the Charity Commission website for another few days and we have also requested to retain Cherubs UK as a working name on the register, which will also assist with the transition from Cherubs UK to CDH UK.

Over the next few coming weeks the logo will be updated to reflect the new name, as will the website and downloadable CDH information booklet. The facebook page will be a little more complicated, due to the fact that because we have over 100 fans/members we are unable to change the name of the page. This will mean that initially only the logo will be replaced and then a new page will be created in the new name, which will run alongside the existing page until such a time as the transition is complete. Once we have transferred picture albums, notes & links etc to the new page, we will inform you and then require you to 'like' the new page. We will also set the existing page up to open on a landing page to re-direct new families or people who are unaware of the changes to the new page.

We have very limited stock of CDH awareness items left and so we can now order new items to reflect our new name very shortly and would hope that they will be available to purchase by the end of June. Of course our CDH awareness badges are unaffected by this change and are still available to order through our online shop. 

Our services to families and medical professionals will remain exactly the same with more improvements and services being added in the future. All donations will be received in the same manner and our fundraising policy and procedures will be unaffected.

We would like to thank you all in advance for 'bearing' with us through the transition period and for your continued support.

CDH UK (formerly Cherubs UK) 

What is in a name?

A name is the first thing that people see or hear upon introduction and so an association is formed almost immediately.  A visual image is struck up each time you hear or see the name again. So, what is in a name? well,  quite a lot it seems. Whether you are a person, a business or a charity, your name is your identity and it says a lot about you and what you do.

Charities operate much like any other business in that they require funds and activity to survive and to be able to offer their services to its users, the only real difference is that a charity is non-profit and the funds received are used to forward the cause and aims of the charity and to support the people who require the services of the charity. Most successful charities have a name synonymous with what their cause is or what they do. This enables them to be easily identifiable and therefore accessible to those who need its services or for those who want to support it.

Since 2003 our charity has developed from a small support group to a much larger registered charity offering not only support, but information & advice, raising awareness & advocating study & research. Last year our charity underwent a big image change with the implementation of new graphics and logo to further improve its cause and aims. One of the areas that we have found difficult to move forward with is in forming relationships with the medical profession and other government agencies and sponsorships from businesses. We have also found that some families have not been able to find us in the UK and have associated or mistaken us with other groups of a similar name, which can affect our ability to help UK families, reduces our fundraising opportunities and has caused problems for us in the past.  Recently, a couple of medical professionals commented that they did not understand the association of our name ‘Cherubs’ with what our charity actually does, or indeed CDH. We asked them what it suggested to them and they replied that they thought we were a bereavement group as our name suggests.  We were not particularly surprised by this, as we have had similar comments made by families in the past. It did however on this occasion cause us to ask the question ‘is this name actually the best name for our charity?’ Bereavement support plays a huge role in our work, but we also have to consider that we are here for newly diagnosed families, surviving babies, teenagers and adults too.

Many of you have become familiar with the name ‘cherubs’ and it is often used as a term of general endearment and children born with CDH are often referred to as ‘Cherubs’. Unfortunately people who have not been affected by CDH or who have been recently diagnosed are not always aware of this or may not understand and this has been problematic for us in the past. It would also be a much more positive thing to move away from the portrayal of CDH babies and children having wings before they are even born and to promote the fact that some babies do survive and go on to lead a normal healthy life.  As a charity one of our aims is to work to improve the survival statistics associated with CDH, which is currently 50% and to try to find the answer to the biggest question that most families ask and that is ‘Why?’ We also feel that it is extremely important to remember how many babies have been lost to this terrible defect and to work even harder to improve the current survival statistic and advocate the need for improved treatments, study and research. Babies who survive CDH can go on to experience many more challenges throughout their lives both physically and psychologically and many of these children are not followed up in the way that they deserve to be and as we hope to see more babies surviving in the future, we need to provide more information and support to families of survivors as their children grow up. Our logo too has a significant role to play in reflecting CDH and its design depicts the heart/lungs/hole in the diaphragm & wings for the babies & children lost to CDH.

In view of all of the above, and after much deliberation we decided that our charity will benefit from a new name and after we made initial enquiries with the Charity Commission to seek their guidance on how we would commence with implementing a name change and after following this guidance, we voted in favour of a new name at the recent AGM. This was clearly shown on the Agenda that was published both on our website and facebook page prior to the meeting. We are currently in the process of making a final decision on the new name and we are awaiting official checks as to the availability of the name that has been voted on at a recent committee meeting.

The new suggested name we feel reflects exactly what our cause is and gives us a unique identity in the UK, which is where we are registered to work and will enable us to be instantly recognisable by newly diagnosed families and the medical profession. We also feel that the name will help to attract others who are not aware of what CDH is to support and donate to our cause and will better promote CDH in terms of raising awareness and fundraising.  The visual ‘look’ will not change and our logo, visuals, colours and graphics will remain exactly the same only the letters and strapline will change.

We are hoping to be able to announce the new name within the next few weeks and subject to everything going according to plan, we will officially apply the name to our charity on the 28th June 2011 to coincide with our foundation day, which we have also made our official CDH awareness day.

We realise that change is often difficult to accept and accustom ourselves to and that some of you will naturally have concerns or comments relating to this announcement. We can assure you that this has not been an overnight decision and many meetings have taken place to discuss this topic. We have made many improvements and advancements relating to CDH, provided new services over the past twelve months for families affected by CDH and we will continue to do so over the next twelve months and beyond, with new ideas and campaigns, more services and help for families. We thank you for your support and hope that you will continue to support babies, children, adults and their family and friends affected by CDH.

Thank you