It’s that time of year again folks, where we initiate and educate all things CDH…..welcome to CDH Awareness month 2017……….who’s in?Why is raising awareness of Congenital Diaphragmatic Hernia so important?
Well firstly, it helps to know what you are dealing with should it happen to you and it provides family and friends with knowledge too. Secondly, it opens up new connections for our families and for the charity, be that with other families, likeminded organisations, medical professionals or media platforms. It also attracts new supporters and donations and can also attract major philanthropy, which all boosts our ability to support better, inform and educate better and to contribute to research. This also means collectively, better outcomes for patients and their families. Result. So please don’t think that changing your profile picture goes unnoticed or is futile……….it could lead to bigger things. Seriously. So together let’s make the month of June a huge success for all things CDH and raise the roof with awareness!
So what have we got planned?
Bake 4 Babies
We have been Baking 4 Babies for a few years now and have seen other charities and organisations follow suit. It is a fun, easy, family orientated, child friendly way to not only raise cakes, but awareness and funds too. We provide the pack, you provide the ingredients, the baking skills and the oven! You can then organise a traditional cake sale and sell your goodies from a stall at a school fair for example (or table in the office!), or you can take a box filled with goodies round to your family and friends and ask for donations in return for cakes or buns, or you could advertise on your facebook page and sell them to whoever will buy them! Try your local gym and cook up some healthy low sugar options……..Use your imagination and get family, friends and work colleagues involved. Raise a bun or two and a bob or two for CDH UK.
Bike 4 Babies
For the more active of you out there, we have a bike challenge……….again, use your imagination and get a few of you together and charge a participating fee or obtain sponsorship for a time trial, race or bike crawl…….do it in fancy dress to make it more fun. You can make it child, wheelchair and pet friendly by organising a safe route off road such as in a park, Sports track or private land (with permission of the owner of course) or you can set a real distance challenge and make it a coast to coast or town to town ride, What about a bike treasure hunt? Think out of the box…………go on get on your bike for babies!
Email firstname.lastname@example.org for a pack
Social Media awareness – CDH Core Challenge
Want to be a top planker? Now’s your chance with our CDH Core Challenge………here’s how
Video yourself, or a group of you holding plank pose (see image below) for as long as you can and try do it against an interesting background………this could be your dog, landmark, artwork, a lovely garden, a group of friends or family…….it’s up to you to use your imagination and video skills! Please don’t cheat and edit the video! You must then post your video on social media using the hashtags #CDHCoreChallenge #CDHUK Get everyone involved and challenge them to it……..ask your favourite celebrity too!
Why core challenge?
Each year we try to focus on a certain aspect of CDH as well as the condition itself. CDH babies and children can often experience developmental delays such as sitting up, crawling and walking, some struggle to even lay on their tummy and can appear clumsy by falling over a lot. This is usually caused by a weak core caused by poor muscle tone and is partly the result of lack of neonatal flexing and contracting and long periods of hospitalisation. Our core is made up of a few muscles which includes the diaphragm. The diaphragm is defective in a CDH patient and so this also impacts on core development and strength. Our core allows us to be stable, keeps us aligned. It allows us to sit up and down, stand up and lay down, play sports, it assists in breathing and helps to expel substances from our body such as poo! It also enables us to push, pull and hold things. Because many CDH patients struggle with their core, we wanted to demonstrate how its strength is important and to draw your attention to it. We also wanted to draw your attention to your lungs and breath, both of which are also affected by CDH, hence the core challenge and plank pose. The plank pose requires good form and core strength and to do it well, you should try not to hold your breath in the pose, but instead focus on your breath and breathe in and out slowly and steadily. Imagine if you had such poor core strength and lung function that you struggled to just sit up never mind try plank? There are many other complications associated with CDH of course, but this is our 2017 focus for the challenge. Please join in and help make this go viral! We will be sharing and tweeting you videos and at the end of June we will see who gets to use the hashtag #TopPlanker
It starts today………so on your marks, get set, PLANK!!
DISCLAIMER: CDH UK will not be held liable in any way whatsoever and assumes no claims or damages for any accident, injury or mishap by any individual undertaking this voluntary challenge. All risks are undertaken by the individual participant. We recommend consulting your Doctor before undertaking any type of strenuous or new form of exercise. You should be in good physical health to undertake challenges of a physical nature. Children should be supervised by an adult at all times. As with any physical pose care should be taken to carry it our correctly to avoid injury and we have provided a diagram to assist with this which we suggest to study prior to under taking the challenge. We also advise carrying out a warm up exercise first.
Forget Me Not
Each year on CDH Awareness Day we pay tribute to the ones whose lives were cut short by CDH and to let their families know that their loved ones are not forgotten and we are thinking of them. This year we are asking you to plant some forget me not seeds in their memory and then ask family and friends to make a small donation to CDH UK in their memory. You can plant the seeds wherever you like; in your garden, local woodland, in a nature park. These beautiful delicate little flowers come in a variety that comes in our charity colours of pink and blue, so once you have planted them and they flower, please take some pictures and send them in. You can purchase seeds at any good garden centre and online in a pink & blue mix variety.
Every year we start a Thunderclap in June that finishes on CDH Awareness Day (28th June) with a mass social media post to raise awareness of CDH and we shall post the link on our facebook page shortly. Please share it around as much as you can to gain as much support as possible.
Pledge For Patients
We have decided to use CDH awareness month to help our families and our friends at Rare Disease UK, Genetic Alliance and SWAN UK to get local parliamentary candidates to sign up to pledge their support for Rare Diseases to ensure a voice for patients in the next newly elected parliament. You can find our more information and obtain a letter template on the Pledge For Patients website and use this link to direct your candidate to the pledge form http://geneticalliance.us8.list-manage.com/track/click?u=144770e74471b2695c19422dc&id=c9c14b8cbf&e=66b4871d41
We would also encourage you to use the official awareness images that can be found on our facebook page to help you raise awareness and to share stories of experiences and fundraising efforts with us during June. If we don’t tell our stories, nobody will understand why awareness is so important. Awareness today means educated tomorrow.
Happy awareness raising CDHeroes!