CDH Newsletter Dec 2013

Transcription

CDH Newsletter Dec 2013
CDH Australia Newsletter
From the President...
Inside this issue
From the President1-2
Thank You 3
Birthday and
Anniversary Wishes 3
Researching CDH3
Membership4
What is CDH?
4
Family Stories
4-5
Member Profiles
6
Volunteers
7
Online Shop
7
Online Support
8
CDH Videos
8
Suggested Reading
8
Donations
Welcome to our December 2013 edition of the CDH Australia Newsletter. It’s with great
pleasure that we put our newsletter together as it’s a chance to review our achievements
and acknowledge the commitment and caring of our volunteers and supporters.
In October we held another successful CAAF attended by members from across Australia.
The CAAF was in Melbourne and ably organised and coordinated by a group of very
hard workers. People like Margaret Polacska, Karen Vella, Danielle Kessner, Liz ProctorHerbstreit and Sophie Franet organised some wonderful speakers, activities and moving
ceremonies. Although these people do not take on these tasks for the recognition, I think
it is important to let them know how much their efforts are appreciated.
9-10
Donate & Fundraise 11
Events
11-13
Annual General Meeting14
Alyssa’s 21st Celebrations 15
Chuckles for Cherubs16
Sunflower Sunday
16
CAAF Brisbane 2014 17
Join Us
18
CDH Contact Details 18
Editor’s Note
Issue 2 2013
The friendships and involvement of our members and supporters encourage the Board
to continue its efforts. CDH families have again been generous with donations and
volunteering. Danielle and Julian Kessner’s party in memory of their daughter Alyssa
is a perfect example. The money the Kessner’s raised covered the costs for the CAAF.
Expenditure for CAAFs for items such as catering, transport and entertainment for the
children is high, however the benefits to our families easily outweigh the costs.
Elizabeth Herbstreit and her husband Neil have been amazing with the fundraising they
have organised this year. Early in the year they raised $650 from a workplace function,
and followed this up in October raising $12,500 by holding a “Chuckles for Cherubs”
event. A fantastic effort. Other members and supporters have also worked hard arranging
fundraisers, raffles and events. Without these funds we would not be able to pay for
19
1
From the President...
compulsory insurance and audits and our other administrative costs such as membership packs, domain servers, printing
and postage.
Our online support services continue to develop. This year marks the introduction of the CDH Awareness videos, put
together by Tara Kessner, that are now available on our Facebook pages and website. Our private facebook pages have
been a great success. We have 569 facebook followers, and although our membership is significantly less than this number
we are pleased that we are able to reach so many people in the community. Contact with CDH Australia is now available
via a national 1800 number. This number, featured on our website, makes contact easier for those seeking assistance and
has simplified the management of our support services.
One challenge we face is to obtain the licences to conduct fundraising in each of the states. Once these are received
it will make it easier for our valued fundraisers to hold functions no matter where they are based in Australia. A further
challenge is to keep abreast of changes in government regulations and policies that affect our organisation. We are seeking
opportunities to enlist pro bono and volunteer support in this area.
Sponsors play a big part in our organisation. Although we have listed our sponsors later in the newsletter I would like to
acknowledge one sponsor in particular. Damon Knott and his company, As One Advertising, continue to provide CDH
Australia with innumerable services from graphics to printing. So much of what we are able to provide comes from the
generosity of Damon and As One Advertising.
As always I would like to recognise the efforts of our volunteers. We can’t underestimate the importance of the numerous
hours that are given to CDH Australia. This organisation could not continue without these individuals spending many hours
(that take them away from their families and friends) on a regular basis. The contribution of the Directors on a weekly basis
is quite significant, but there are also many other volunteers such as the State Family Support Contacts, our Newsletter
Editor, our Funding Officer, Projects Officer and Information Officer who often go unrecognised.
We are now calling for State Volunteers to organise the Sunflower Sunday events within their State. We would like as many
people as possible involved in the setting up of our special awareness day, either on a working group to help with the
arrangements or being involved on the day. This is our opportunity to get to know one another and to introduce our families
and children to many of our friends who we only know through social media. To all of our volunteers I would like to say,
your contribution is what ensures that not only does CDH Australia continue to grow and thrive, so will our CDH Family.
The following are a quote and a parable about volunteering, I think they both sum up our CDH volunteers and supporters.
“I don’t know what your destiny will be, but one thing I know: the only ones among you who will be really happy are those
who have sought and found how to serve.” -Albert Schweitzer
“A woman was walking along a beach filled with starfish. As she walked, she would
stoop down, pick one up at random, and throw it back into the ocean. A man came
upon her and asked why she was bothering with throwing some back when there were
so many--how could it possibly make a difference? She picked up another starfish,
threw it back into the ocean, and said it made a difference to that one.”
-Recited by
Geraldine Warren at NCS Volunteer Recognition night.
Our thoughts and love are with you all as you travel your CDH journey.
Christine Waite
President CDH Australia
Issue 2 2013
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Thank You
CDH Australia would like to thank all the people and organisations who have helped over the past few months,
particularly with organising the CAAF. We would also like to thank everyone who attended the CAAF because without you
it wouldn’t be such an interesting and enjoyable event.
Amy Proctor
Anna Polacska
As One Advertising
Australian Paper Maryvale
Blueprint
Carabott Nominees
Cathy Allan
Chris Stilling
Damien Roberts
Damon Knott – As One Advertising
Dana Rosa
Danielle Kessner
Debbie Proctor
Dr Emily Olive
Dr Michael Stewart
Dr Penny Brabin
Dr Ralf Heine
Dr Rod Hunt
Elizabeth Herbstreit
Gavin Blue
Graham Rosa
Gus Fraser – RCH
Jenny Borg
Jessica Keavney
John Cartwright
Julian Kessner
Karen Vella
Kate Bride – RCH
Kelly Stribbling
Kirsty Johnson
Lauren Matthews
Lorraine Corcoran
Lorre Polacska
Margaret Polacska
Melissa Dodsworth
Meredith Newth
Miranda Hardenberg
Neil Herbstreit
Pam Alsop
Pam Reeves
Pauline Rode
Robyn Micallef
Romanyk Investments
Royal Children’s Hospital Melbourne
Sophie Franet
Stephanie Franet
Tara Kessner
Taralye
The Little Green Bird
Top Tic Pizza
Birthday and Anniversary Wishes
CDH Australia wishes all our CDHers who have recently
celebrated a birthday or who have an upcoming birthday,
a wonderful day!
Issue 2 2013
CDH Australia is thinking of all our angel CDHers and their
families on their birthdays and anniversaries.
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Membership
Our members run our organisation. They vote on various
issues, elect our board and fill director positions. We
have different types of membership that encompass a
diverse range of people with varied connections to CDH.
Our paid-up members support us by contributing to our
administration costs so that the majority of donations and
fundraising can go towards helping families. So why not
become one? Membership only costs $20 a year or $10 for
concession. Go to http://cdh.org.au/become-a-member/
to sign up.
CDH Australia would like to extend a warm welcome to all
of our new members.
What is Congenital Diaphragmatic Hernia?
Dr Rod Hunt ( FRACP, MRCP(UK), MMed, PhD) is the director of the Department of Neonatal Medicine at The Royal
Children’s Hospital in Melbourne.
He has filmed a video to explain what CDH is and some of the outcomes that may occur. CDH Australia would love you
to share this video with your family and friends to help spread some CDH Awareness: What is CDH with Dr Rob Hunt.
Family Stories
On our website families are able to share their personal CDH journey with other families through their children’s stories,
photos, blogs, videos and poems.
http://cdh.org.au/our-families/
We would love to include your CDHer on our website. To submit a photo and/or story of your CDHer please email
information@cdh.org.au
Harlee Timms; 1 November 1999
I was 14 weeks pregnant when we found out that the baby I was carrying had CDH. It was found by coincidence during
an ultrasound scan, which was carried out to check the placenta as I had had some bleeding. The doctor was really
upset when she told me the news but I don’t think the full impact of what was happening hit me until I went home and
looked up CDH on the Internet, found CHERUBS and realised just how serious this was. Our baby had a 50 per cent
chance of survival and was in for a very traumatic start to life.
Claude and I decided to try and stay focused and positive during the pregnancy for our own sakes and also for the baby.
The amniocentesis showed there were no chromosomal abnormalities and also that we were having a boy. He became
known to us as Harlee and I felt very close and protective of him throughout the pregnancy and in many ways didn’t want
the pregnancy to end as I knew he was safe and well as long as he stayed inside me.
There was nothing that could really be done for Harlee whilst I was pregnant. I looked into in utero surgery but we
decided the risks involved were too great for us to take. We were told it was really a matter of “wait and see” once Harlee
was born. I did have a course of steroid injections which were to help the lung growth and many, many ultrasounds,
including link ups to other hospitals.
Issue 2 2013
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Family Stories
Harlee was born in Townsville on 1st November, 1999. A big boy at 8lb. I was induced because my waters broke the
previous day and five hours later Harlee was born. I never got to hold him and only saw glimpses of him as the doctors
proceeded to bag him and put tubes into him. Harlee was whisked off to Intensive Care and I was whisked off to theatre
as I had post-partum haemorrhaging and needed to have the placenta manually removed.
Keep reading about Harlee
Issue 2 2013
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Member Profiles
Jess Keavney
My husband, Trent and I reside on the Gold Coast in Queensland and have three children Ava 4, Hope 2 (our CDH
survivor) and Max 1. Trent is a Police Officer and I am a part-time high school teacher and photographer.
I found CDH Australia during my pregnancy and will forever be thankful for the support I received at the time, and
continue to receive, as I travel our CDH journey. After attending the 2012 CAAF in Perth, I decided to volunteer as a
support contact in my region.
During my pregnancy, I did not know any CDH families in Queensland. I had a lot of questions about our local hospital
and the processes and would have loved to be in contact with another local family. This was a large reason why I
decided to volunteer.
As the Sth QLD CDH Australia contact, I have email and phone contact with expectant mothers and CDH families from
around Queensland. I also work with the MFM social workers to create awareness for CDH Australia. My hope is that
every expectant CDH mum at the Mater is given one of our brochures, so that they know we are here if they need us.
I also organise the annual Sunflower Sunday event and I am currently organising next year’s CAAF.
I love that I have the opportunity to volunteer with CDH Australia and support other families as well as create awareness
of this wonderful organisation.
Issue 2 2013
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Volunteers
Have you, or someone you know, ever thought about
volunteering for CDH Australia? CDH Australia relies on
volunteers to keep our non-profit organisation running.
We have many different voluntary roles to suit all kinds of
different skill sets. http://cdh.org.au/volunteer/
We Need You!
CDH Australia is seeking expressions of interest from our
WA members to take on the role of WA State Contact.
This role would be suitable for someone who has the time
and is willing to support families along their CDH journey.
Typically the time commitment is up to one hour per week,
but fluctuates when new families are needing support or
there are events to organise. Please email Christine for
more information president@cdh.org.au
CDH Australia currently has numerous positions available
for anyone interested in volunteering. Each of our
volunteers play an instrumental role in our organisation,
and are highly valued by our CDH community.
Our volunteers are based all over the country and majority
of the work can be done from the comfort of your own
home, and in your own time.
If you can spare just a few hours a month, or if you are
looking for a more hands on position, we would LOVE to
hear from you.
Contact us at information@cdh.org.au and we will answer
all of your questions and provide you with more detailed
information to help you decide if you are able to help us
help our families.
Online Shop
You can order merchandise, membership and support information through our online
shop. It’s easy to use and online payments are securely made through Paypal. Buying
CDH Australia merchandise is a great way to raise awareness of CDH.
http://cdh.org.au/products-page/
Teddy Bear
The cute and cuddly CDH Teddy Bears make the perfect gift for
kids, as well as parents and relatives of CDHers. The teddies
are a great size at 28cm tall and come wearing a CDH t-shirt,
which helps to raise awareness of CHD amongst friends and
family. The teddies are available for purchase for only $25 each,
including postage.
CDH Teddy Bear
Issue 2 2013
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Online Support
Three private Facebook groups have been established to allow Australian CDH parents and adult survivors to openly
share their CDH experiences with each other while providing and receiving support in a more secure social networking
setting than what is available in our main open group.
We have a group for bereaved parents, a group for surviving parents and adult survivors and a general group where all
Australian CDH parents and adult survivors can join and provide support to each other as well as expectant parents.
These groups have been trialled with great success and we invite all interested Australian CDH parents and adult
survivors to contact us at information@cdh.org.au if they would like to be added to the group.
CDH Videos
Sometimes explaining about CDH and what it means for you to friends and family can be confusing and overwhelming.
This year CDH Australia has filmed and created several videos to make it easier to explain and understand CDH, to help
raise awareness of CDH, and to give an insight into the journey of a CDH family.
Please visits our videos below and share with your friends and family:
CDH and CDH Australia Information
CDH Awareness
Q&A with CDHer Rayne
CDH Australia’s Annual Forum (CAAF)
What is Congenital Diaphragmatic Hernia? (with Dr. Rod Hunt)
Suggested Reading
The Forgiveness Handbook: A Simple Guide to Freedom of the Mind and Heart, by Clifford B Edwards.
Issue 2 2013
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Donations
CDH Australia would like to thank the following people for their generous donations. We
also sincerely thank those that have donated but wish to remain anonymous.
Name Alethea Walker
Details and Tribute Message Donation in honour of Liam Walker
Androula Charalambous
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Angela Logozzo
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Anna Polacska
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Bernice Tanian
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Caron Mugica
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Chris Hobbelen
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Craig Williams
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Dorothy Waite
In the name of Paul Holwell - 60th Birthday
Frances Rogers
Fundraiser in honour of Adam Vella
Gippy's Office Furniture
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Glynis Mahoney
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Helen Johns
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Helena Fergusson
Fundraiser in memory of Gabrielle
Jenine Smith
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Jennifer Holmes
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Jody Farrell
Donation in memory of Bailey
John Cartwright
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
John Wiseman
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Judy Scherrenberg
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Julian Kessner
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Kathry Blakeway
Issue 2 2013
Kathryn Murphy
In memory of Jessica Kate Murphy
Kerry McLachlan
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Kerryn Sando
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Kevin Saunders
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Kirsty Gannon
Donation for Gabrielle Fergusson's Fundraiser
Lauren Beckett
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Lawrence Polacska
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Leah Dean
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Leanne Goldsworthy
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
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Donations
Issue 1 2013
Lee Gardam
In memory of Tully James
Liz Vander Linden
CAAF 2012
Lyn Franssen
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Mary-Anne Goldsworthy
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Merideth Newth
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Norm Fergusson
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Pazzaz Printing
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Peter Guy
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Rita Muscatt
Fundraiser in honour of Adam Vella
Sandra Schembri
Fundraiser in honour of Adam Vella
Sharon Knott
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Sharon Nayagam
Fundraiser in honour of Adam Vella
Sherrie Irwin
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Shirley Romanyk
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Tanya Quirk
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Toni Watson
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Trista Langley-Tyler
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
United Way on behalf of
Jaana Rosenlund
In honour of Gabe Kia
Vanessa & Ray Manitta
Fundraiser in honour of Adam Vella
Various
Liz Proctor - Fundraising
Various
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Various
Fundraiser in honour of Adam Vella
Vicki Trueman
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Viv Fogarty
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
Wendy McKay
Fundraiser in recognition of Alyssa Kessner's 21st Birthday
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Donate and Fundraise
CDH Australia also acknowledges the fabulous efforts that many people have made
holding and organising fundraising events, including the Kessner family’s fundraiser
in memory of their daughter Alyssa for her 21st birthday, comedy night “Chuckles for
Cherubs” by Liz and Neil Herbstreit, and the 2013 CAAF fundraiser by Karen Vella. A
huge thank you to everyone involved.
Donations and fundraising help us to help families. You can support CDH Australia by
collecting donations or hosting a fun event for your school or work community.
To learn how you can donate or fundraise go to http://cdh.org.au/how-you-cansupport-us/
Events
CDH Australia Annual Forum (CAAF) Melbourne 2013
This year the CAAF was held in Melbourne, at the Royal
Children’s Hospital in Parkville and at Taralye in Blackburn.
Both of these venues were fantastic for our needs and
were donated by their organisations for use by CDH
Australia.
DAY 1
The CAAF was opened by the President of CDH Australia
on Friday 18 October in the Ella Latham Auditorium at the
new Royal Children’s Hospital RCH). The hospital is an
amazing place with plenty of interesting features such as
the Meerkat exhibition and the giant aquarium.
Our first presentation was by Heartfelt, a volunteer
organisation of professional photographers from all over
Issue 1 2013
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Australia dedicated to giving the gift of photographic
memories to families that have experienced stillbirths,
premature births, or have children with serious and
terminal illnesses. CDH Australia donated funds to
Heartfelt’s Camera Project for the purchase of a Camera
Kit to be given to Townsville Hospital.
Dr Rod Hunt, Director Neonatal Medicine, RCH, then gave
us an update on the RCH Neurodevelopment Followup Clinic. He was followed by Dr Ralf Heine, Pediatric
Gastroenterologist/ Allergist, RCH, who spoke about
long term gut and allergy issues in CDH children. The last
speaker was Lauren Matthews, Executive Officer, Early
Childhood Intervention Australia (ECIA) who spoke about
the support services available for families with young
children with a disability or developmental issues.
In the afternoon a Q&A session with a panel of Health Care
professionals was held. After the Q &A session there was
a family debrief and a break before many of the attendees
met for a social dinner.
DAY 2
Melbourne was very well behaved for the second day of
the CAAF and produced a sunny but not too hot day. The
venue was perfect for our needs and the children had a
wonderful area to play and relax.
A beautiful tribute ceremony was held including a
slideshow of photos of our babies and some of our
children. The ceremony honoured all our CDHer’s, with
a highlight being the display board where each child was
represented by one of nature’s creatures.
The ceremony was followed by an open discussion
amongst the parents. Dr Penny Brabin then gave a
presentation on parenting after things go wrong - if a baby
dies or has special health needs.
The day ended with group photographs, the Annual
General Meeting (AGM) and a pizza and chips dinner.
Information about the AGM can be found later in
this newsletter. There are a number of people and
organisations to thank. To everyone who contributed (no
matter what the size of your contribution) CDH Australia
says a big thank you.
Issue 1 2013
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Issue 1 2013
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Annual General Meeting
The Annual General Meeting was held at the conclusion of the 2013 CAAF on Saturday 19 October at Taralye, Blackburn.
Minutes from the previous AGM, the Annual Report and Annual Auditors report were tabled and endorsed.
All positions were declared vacant and were filled as follows:
• Christine Waite nominated for President and accepted
• Kay Holwell nominated for Vice President and accepted
• Kath Murphy nominated for Treasurer and accepted
•Sharon Knott nominated for Family Liaison Coordinator and accepted
• Linda West nominated for Secretary and accepted
The inaugural life member was declared. Life membership was awarded to Danielle Kessner in recognition of the tireless
contribution over a long period of time she has made to CDH Australia.
A number of items were raised in General Business and will be discussed and where possible acted upon at Board level.
These Items were:
• Early Intervention Scheme
• Hospital Liaison Volunteers
• Care Packages
• Sunflower Sunday
• Brainstorming
The AGM was closed at 4:45pm
Issue 1 2013
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Alyssa Kessner’s 21st Birthday Celebrations
On the 11th May, Danielle and Julian Kessner and their children Tara and Ethan held a fundraiser for CDH Australia in
honour of their daughter and sister, Alyssa, to celebrate what would have been Alyssa’s 21st birthday in Morwell, Victoria.
The Kessner’s were touched by the wonderful support shown by their family and friends with around 80 guests attending
the celebrations, as well as the fantastic support shown by 57 local businesses that donated over 70 goods or services
for fundraising.
Family and friends approached businesses for donations with a letter explaining the purpose of the event and what CDH
is and how CDH Australia helps families. So awareness of CDH was widely spread. Family and friends also helped set-up
on the day at RSL club, which offered the room hire for free.
Chris Waite and Kath Murphy (President and Treasurer of CDH Australia) attended the celebrations and Kath read a
heartfelt 21st speech she wrote to Alyssa expressing the tremendous contribution her family has made in her honour by
founding CDH Australia and working tirelessly to support families for over 14 years.
A moving video of Alyssa’s short life, lovingly produced by her younger sister Tara, was then shown and didn’t leave a
dry eye in the room. Throughout the night a slideshow of Alyssa and other CDHers was played onscreen and information
posters on CDH and CDH families’ stories were displayed for guests to read.
The fundraisers on the night included a silent auction with the prized item being a Carlton football jumper signed by the
team that sold for $450. There was also a raffle, lucky number draw, coin toss game and the much talked about ‘dummy
spit competition’ where contestants spat dummies as far as they could to win a prize. Two male contestants blew the
competition away with ‘spits’ over 12 metres with the winning contestant only narrowly beating the runner-up.
Combining fundraisers on the night and donations made the total amount raised for CDH Australia ended up being over
$5,000! An amazing amount which went towards funding this year’s CAAF in Melbourne.
CDH Australia says a big thank you to Danielle, Julian, Tara and Ethan and their supportive family and friends for their
fantastic fundraising effort, and we have Alyssa in our thoughts on what would have been her 21st birthday.
Issue 1 2013
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Chuckles for Cherubs
In October this year Elizabeth and Neil Herbstreit held a very successful function to raise money for CDH Australia.
Liz and Neil are the proud parents of two children, 3-year-old Max and their miracle CDHer, 15 month old Marley.
They organized the event to raise awareness for Congenital Diaphragmatic Hernia, and through that awareness help to
raise funds to save babies that are born with CDH.
Entertainment for the night included Dave O’Neil (Spicks & Specks/Tractor Monkeys), Chris Bennett (The Cage, Gold FM)
and The Nelson Twins (featured in Australia’s Got Talent).
Neil and Liz organised items for auctions and raffles in addition to the show and raised the amazing amount of $12,500.
This was a wonderful result and CDH Australia is very grateful for their support.
Sunflower Sunday
CDH Australia Sunflower Sunday events will be held around the country on Sunday
23 March 2014. Sunflower Sunday is an annual day of celebration and awareness
of congenital diaphragmatic hernia, also known as CDH.
We are currently looking for Sunflower Sunday Coordinators in WA & STH QLD ...
Please email Sharon familyliaison@cdh.org.au, if you would like to assist in one of
these states.
SA: Alex will be again coordinating your event. Alex will be emailing everyone,
please look out for it.
Vic: Liz will be sending out an email, so please look out for it.
NSW: Coordinators Kellie and Kerrie would like venue suggestions: Please email
hairprodigy@yahoo.com.au or leave a post on this event page.
Nth Qld: This event will be held in Townsville. State details TBA
Issue 1 2013
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CDH Australia Annual Forum (CAAF)
Brisbane 2014
The planning for the CAAF 2014 has already started! Next year’s event will be held in
Brisbane on Friday 10th and Saturday 11th October.
The CAAF is a fantastic opportunity to meet other CDH families or to catch up with friends
met in previous years. We hope to see lots of our CDH families in sunny Brisbane and
remember extended family members (grandparents, aunts/uncles etc) and friends are also
welcome to attend.
Issue 1 2013
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Join Us
On our Facebook page!
Our public facebook page, CDH Australia, is accessible to everyone. Here we provide regular updates on our
CDHers, upcoming events and fundraisers, and also answer any questions our facebook friends may have.
For details on upcoming
events:
www.cdh.org.au/events/
www.facebook.com/pages/CDH-Australia/113796065328334
CDH Australia Contact Details
Suite 2 – 40 Central Walk,
Joondalup, WA 6027,
Australia
1800 149 562
www.cdh.org.au
information@cdh.org.au
Please see the below links for current details
including roles and contact details of:
Volunteers
http://cdh.org.au/volunteers/
Board of Directors
http://cdh.org.au/board-of-directors/
ABN: 60 131 315 145
Issue 2 2013
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Editor’s Note
Welcome to the second newsletter edition for 2013.
It is almost Christmas again and 2013 has seen another wonderful year for
CDH Australia.
Over the past few months our families have had the pleasure of meeting up
again as part of our annual CAAF event. We have also seen new and creative
fundraising events that have been very rewarding and enjoyable for everyone
involved. 2014 events are already in planning stages and promise to be as
enjoyable as those we have celebrated in 2013.
I hope you enjoyed our last edition for the year. Due to other commitments
I have made the difficult decision that this will be my last newsletter. I would like to thank everyone for their help and
support during my time as the newsletter editor. It has been a very rewarding experience, and I have met some wonderful
people. CDH Australia is an amazing organisation and hopefully it will continue to grow and increase awareness in the
coming years.
This newsletter is all about you, our CDH families, so please email newsletter@cdh.org.au with your questions,
suggestions and comments. If you would like to submit something for inclusion for the next edition please do as the new
editor will be very happy to hear from you!
Bye for now....
Jess
““A journey of a thousand miles begins with a single step.”
Lao Tzu
The information in this newsletter is for education only. It is not meant to be used inthe place of proper
medical care and advice. CDH Australia does not encourage or discourage anymedical treatments or
procedures. Our purpose is to educate families and medical care providers so that they may make the
best decisions for the patients’ interests. You cannot compare your child to other children born with
CDH, they are all different. The opinions aired by contributors to this website are their personal views
are not necessarily the views of CDH Australia, or its members or staff.
Issue 2 2013
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