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Note from the President

For no family to face congenital diaphragmatic hernia (CDH) alone.

It is a vision Danielle Kessner, the founder of CDH Australia, held in her heart when she began helping other CDH families in 1999 – seven years after her daughter Alyssa sadly died from CDH.

 
When Alyssa was born, Danielle knew no other family with a child affected by CDH. It took seven years for her to discover other families. Knowing how very devastating CDH is, Danielle began supporting Australian families online with the mantra “If I can help just one other family not face CDH alone then I have achieved what I set out to do” driving her. She began annual forums for families in 2001.
 
It is this commitment and dedication that CDH Australia continues to strive for with our formal vision “for no family to face CDH alone”. And we will work towards our vision through our mission “to improve the lives of those affected by congenital diaphragmatic hernia (CDH), support and advocate for families, raise awareness and support research”.
 
We have taken steps towards our vision through a number of exciting initiatives that you can read more about below.
 
We hope you enjoying reading our news.
 

Margaret Polacska
President – CDH Australia

Mother's Day thoughts 

Mother's Day brings mixed emotions for parents of CDH-ers. As we celebrated the gift of motherhood we also gave thoughts and love to those mothers who sadly hold their babies in the hearts. 

Young Lungs


The Young Lungs Community Consultation was held on 28 February and was an opportunity for CDH Australia to provide feedback and recommendations to the Lung Foundation Australia, together with other community groups, to consider when planning out the Young Lungs Program strategy.
 
The Young Lungs program, the first Lung Foundation Australia’s paediatric specific program, will work with health professionals, families and disease-specific organisations for improved outcomes for all paediatric rare lung diseases, such as, congenital diaphragmatic hernia.
 
This program will be led by Professor Adam Jaffe, a paediatric Respiratory Specialist and Chair of the Young Lungs Clinical Advisory Group, and Adam will present at our CDH Australia Annual Forum in Sydney in October.
 
Further details about the outcomes of the community consultation can be found on our website.


 

Keeping bugs at bay


Winter, and its associated cold and flu bugs, can bring anxiety for parents raising CDH-ers with respiratory vulnerabilities. Here are a few tips for how you can try to keep the winter bugs away:
  • keep up to date with flu vaccinations as per your doctor's advice
  • for our younger CDH-ers: minimise exposure to germ centrals ie: public playgrounds, shopping centers etc
  • make sure your child washes his/her hands - regular hand washing is the simplest, most effective way to get rid of cold and flu bugs
  • for school aged children, send them to school with hand sanitiser
  • teach your child to cough into the crook of their arm, this will prevent his/her germs spreading elsewhere
  • keep your CDH-er well hydrated and give them a balanced diet
  • ensure they don’t share drinks/food with other children at school. 
Most important tip:  if your CDH-er is very unwell seek medical treatment immediately.
 
Another useful resource available for download from our website is the CDH School Information Sheet.

 

Developing our people


Our president was fortunate enough to undertake an Australian Institute of Company Directors scholarship on the Role of the Not for Profit Chair made possible by generous support from the Perpetual Foundation and JS Love Trust. 
 
The course, attended by many Chairs of large not for profit organisations, provided a great opportunity for CDH Australia to build skills in leadership and governance, network with other not for profit organisations, and gain insight into many of the challenges NFP directors and Chairs face on a daily basis.
 
In late May, our support volunteers will attend a course at the Australian Centre of Grief and Bereavement customised to our needs.  The aim of the training is to provide our support volunteers with the knowledge and tools to care for themselves whilst providing appropriate support for other families. This has been made possible through the generous support of the Collier Charitable Foundation.
Save the Date 

Noah's Hope Gala Night
11 July 2015
More information


CAAF Sydney 
16-18 October 2015
email for further information

Sunflower Sunday


Sunflower Sunday, held on 29 March, started its growth to a more public awareness event this year by including an awareness walk profiling our cause and brand in public areas across the country. Many families enjoyed a great social day out and raised awareness of CDH by raising banners, handing out balloons and sunflower seeds. You can read more about each event and see photos on our website.
 
We also began our Sowing Seeds for CDH awareness campaign by distributing 250 packets of sunflower seeds generously donated by Bunnings. The campaign aims to grow supporters through the fun of growing sunflowers and harvesting seeds to pass on to more people to repeat the cycle, with each grower asked to watch our Sowing Seeds for CDH video.

We our pleased to announce that Yates Gardening will be promoting our video through their media channels. Their Facebook page has over 40,000 followers so we hope before long thousands of people will have watched our video and learned what CDH is.

Next year we hope to be in a position where we can include hospitals, businesses and schools and kindergartens connected to CDH families in our Sunflower Sunday celebrations by holding awareness raising morning teas with gold coin donations.

Membership


CDH Australia has changed its membership fee structure. Ordinary Membership is open to parents of children affected by CDH and their extended families and friends. The first year of membership is now free to enable members to access resources that will be available in the future through a secure community.
 
To continue membership after the first year, an annual fee will be applicable due on 1 July each year. Currently membership costs $30 per family. Any new members wishing to pay for membership will receive 2 years of membership. We hope we will be able to offer some great loyalty benefits to financial members in the near future.
 
Healthcare Membership is free for healthcare professionals with an interest in CDH who wish to work with CDH Australia and other healthcare professionals to share knowledge and collaborate on projects.
 
You can join as a member through our website or by email.


 
Are you a digital guru?

Are you good with technology and in particular managing web content? CDH Australia requires a volunteer to manage updates of our website. Training on the content management system will be provided. Please email to express your interest.

Noah's Hope

Chantelle and Josh are hosting Noah's Hope, a fundraiser in honour of their son Noah, and have been working very hard organising the large event aimed to raise awareness of CDH and raise funds for CDH Australia.

With State MP Jacinta Allan as ambassador and Mikayla Garner singing acoustic covers, the fundraiser on Saturday 11 July, 2015 at The Conservatory - All Seasons in Bendigo, Victoria, promises to be a night to remember. 
 
The night will include a live auction, silent auction, raffles, mystery balloon pop amongst other fun activities. Tickets can be purchased online. All Seasons is offering discounted accommodation for event guests so get a group of friends together, and come along for a great night, raising awareness and funds for an amazing cause. 
 
Bendigo Advertiser article

Thank you for your 
generous support


Helping to raise awareness of CDH and funds for CDH Australia were the following families who generously gave their time and effort: Candles for Clementine, Shoes off for Marley and Kurt’s Tombola.
 

Candles for Clementine

The passing of precious Clemi broke our hearts, and brought immeasurable grief to her parents Kristin and Chris. In an inspiring and kindhearted mission their family and friends rallied to create something special to keep the memory of Clemi alive and spread awareness of the condition. They began making and selling beautiful “Candles for Clementine” with all profits donated to CDH Australia.
 
From their Facebook page: “We are very excited to announce we have made our first (of hopefully many) donations to CDH Australia of a massive $4,000. We are so pleased to be able to support this fabulous organisation in the work they do. Thank you so much to everyone who has helped in making this achievable.”
 
In addition, we were overwhelmed when a family friend generously donated a further $3,000.
 
Our heartfelt thanks to Kristin, Chris and all their wonderful family and friends for working tirelessly to make candles in memory of precious Clementine in support of CDH Australia. Candles for Clementine 

         
 

Shoes off for Marley

Shoes Off For Marley, on Australia Day, was a huge hit again this year.  The hot day saw most of the festivities were indoors, including raffles, auctions. Some of the contestants in our infamous Mud Crab Race were affected by the heat so were given consolation prizes for sleepy crab!
 
We raised $4000 in total, which was split between CDH Australia and The Townsville Hospital NICU Ward as is done each year. 
 
Channel 9 Local News covered the story, and The Townsville Bulletin and Zinc FM plugged the event prior to the day.  Entertainment on the day was also a huge hit this year having two of Australia’s Most Popular Comedians from Melbourne, John Burgos & Doug Chappel Jnr. perform as well as a local band “Make A Friend” - both acts were amazing. 
 
Also, how could it be Australia Day without a lamb roast on a spit, lamingtons, meat pies and plenty of cold ones.  The day couldn’t have been what it was, if it wasn’t for Marley’s Dad, Jeff Maurice, his tireless efforts over the last six months was what made the day the success it was and we can’t wait for next year!
Mikayla (Marley’s mum)
 
Our heartfelt thanks to Jeff and Mikayla for their dedication in organising the Shoes off for Marley event each year for the past 3 years and fundraising much needed funds for CDH Australia and the Townsville Hospital.

      
 

Kurt's CDH Tombola

Kurt’s parents, Taleah and Joel, raised funds for CDH Australia and awareness of CDH by holding a tombola in their son Kurt’s honour, which by chance was held on Sunflower Sunday.
 
The local community supported the event held at the Uniting Church Auditorium, Maryborough, Queensland, with businesses donating goods for the tombola and supporters purchasing tickets to raise an amazing $1,800.
 
The event also highlighted the seriousness of the cause by displaying a board with images of the angel babies next to photographs of Kurt’s journey. Taleah (Kurt’s mum) wrote:
 
It was quite emotional when we made mention of little Polly to the crowd. I felt I had an instant connection with Pollys mum, Susan, as we were due on the same date. Unfortunately Polly grew her angel wings early. I asked people to please take a moment to remember all of the CDH angels today, on Sunflower Sunday.
 
Thank you to everyone who supported our tombola: donors, volunteers and those who attended on the day. We raised a total of $1,800 including the $175 from the plant sale thanks to the Giles family. A big thank you to Nicole from L'amour Photography, who donated her time on the day to take these images for us.
 
Our heartfelt thanks to Taleah and Joel for the many hours they spent promoting and organising the event, including the donated prizes, in support of CDH Australia.

       
 
Save money on entertainment
Would you like over $20,000 of value with 1,000s of up to 50% off and 2-for-1 offers for entertainment?  Buy an Entertainment Book and CDH Australia will receive $13 from every membership sold. Australia-wide editions are available. For enquires email Elizabeth (CDH-er Ruby's grandmother).

Tax time donations welcome


CDH Australia supports hundreds of CDH parents and their extended family each year. Our organisation receives no government funding; we rely on donations and the passion, gratitude and commitment of our volunteers who run our board, fundraise, organise events and manage projects. We give many thanks to the businesses and individuals who generously donated and/or provided voluntary services enabling CDH Australia to exist.

If you would like to support our important services please make a donation

Every contribution helps. Donations $2 and over are tax deductible
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