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 2 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. 3 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 4 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 5 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 6 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 7 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 8 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 9 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 10 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 11 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 12 Issue 1 2013 13 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 14 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 15 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 16 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 17 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 18 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 19