Welcome!

16 11 2008

Welcome to the blog for CHERUBS Australia!

 Our Names are Angela and Sharon and we are the Australian Representatives for the International group of CHERUBS.

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Events

8 12 2008

CHERUBS Australia Annual Member Forum – Melbourne 2009

 I am pleased to announce that CHERUBS Australia has been successful in obtaining a $3,000 grant from the City of Melbourne to help fund this year’s CHERUBS Australia Annual Forum (CAAF), which will be held at the Rydges Hotel in North Melbourne (Cnr Flemington and Harker Rd North Melbourne – Opposite the Royal Children’s Hospital) on Friday 16th and Saturday 17th, with a family day on Sunday 18th October 2009.

 

 Rydges North Melbourne was chosen for its competitive pricing, standard of rooms and convenient location—just a short tram ride from the heart of Melbourne and close to the Royal Children’s Hospital and the Royal Women’s Hospital.

 If you would like to book accommodation at Rydges, please go to http//www.rydges.com/cwp/cherubs  or call Alex Jonas on (03) 9329 1788. I inspected the recently refurbished hotel guest rooms and found them to be spacious, clean and comfortable, and they catered well for families.

 

In addition to the grant, we have also set a fundraising target of $3,000 to raise the balance of the conference budget. The total budget will cover the cost of conference facility hire and catering (morning tea, lunch & afternoon tea).

 The conference program will incorporate medical workshops on Friday and support workshops on Saturday. Speakers are yet to be confirmed, however, we already have commitment from Dr Michael Stewart (Consultant Neonatologist—Royal Women’s Hospital and the Royal Children’s Hospital) and Theresa Lynch (Bereavement and Support Counsellor from the Fetal Management Unit—Royal Women’s Hospital) to facilitate workshops.

 In addition to the workshops, two social events will be organised. There will be a family dinner on Saturday night at a suitable restaurant close to the hotel, and a family day on Sunday at the Werribee Open Range Zoo, which is full of amazing African animals living in a wide, open savannah—the kids (and adults) will love it!

 

 

 We are expecting this year’s CAAF to be as successful as past CAAFs and look forward to meeting up with new and old CHERUBS friends. We hope you can join us here in Melbourne.

 

 Margaret Polacska

Fundraising/Funding Coordiantor

fundraising@cdh.org.au

On behalf of the CAAF Melbourne 2009 Committee





STATE Contacts

8 12 2008

Victoria

Grieving Families:  Danielle Kessner  danielle.kessner@cdh.org.au or  03 5135 6999

Surviving/Expecting Families: Karen Vella  karen.vella@cdh.org.au  or  03 9748 9644

NEW SOUTH WALES

Grieving Families: Kirrily Hanlon  kirrily.hanlon@cdh.org.au or  02 9548 3360

Surviving/Expecting Families: Lynda Viset lynda.viset@cdh.org.au or 02 4393 6454

SOUTHERN QUEENSLAND

Grieving Families: Linda West  linda.west@cdh.org.au or 07 3886 9710

Surviving/Expecting Families: Joanne Kjaersgaard joanne.kjaersgaard@cdh.org.au or 07 3372 8687

NORTHERN QUEENSLAND

Grieving Families: Robyn Mills robyn.mills@cdh.org.au or  0412 089 189

Surviving/Expecting Families: Judy Scherrenberg  judy.scherrenberg@cdh.org.au or 07 4774 1535

Western Australia

Grieving Families: Lisa Bonser lisa.bonser@cdh.org.au or 08 9203 7204

Surviving/Expecting Families: Maryanne Reid  maryanne.reid@cdh.org.au or 08 9309 2192

TASMANIA

Surviving/Expecting Families: Sabine Kingston sabine.kingston@cdh.org.au or 0419 578 495

NORTHERN TERRITORY

Grieving Families: Helen Harrison: helen.harrison@cdh.org.au or 089 481 304

AUSTRALIA CAPITAL TERRITORY

Grieving Families: Rebecca Mills rebecca.mills@cdh.org.au or 0420 524 550

OUTBACK AUSTRALIA

Surviving/Expecting Families: Mel Nicol mel.nicol@cdh.org.au or 08 8091 6626





CDH Info

8 12 2008

CDH Info

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies1, of all races, religious backgrounds, and financial status – no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year – in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it’s almost as common as Spina Bifida (7 in 10,000) 2 – yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!3

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Every CDH baby is different, there is no way to predict the outcome of any patient. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support.

Looking for support dealing with Congenital Diaphragmatic Hernia? Make sure to visit CHERUBS – The Association of Congenital DIaphragmatic Hernia Research, Awareness and Support





Members Stories and Photo’s

8 12 2008

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