CDH Australia has built its support services over a number of years, beginning in 1999 with a single Australian representative of CHERUBS in the USA supporting ten members, to becoming an official Australian organisation with a Board of Directors helping over 100 families.
Through our growth and evolution we continue striving for our mission and objectives to support families affected by CDH and work with other CDH organisations to advance research on CDH treatments and support.
We are proud of our beginnings and thank CHERUBS for their support during the early set up of our group originally called CHERUBS Australia Organisation. In recognition of our association and the valuable support our families have received over the years, we continue to fondly call our CDH children “cherubs”.
A special thank you also goes to Danielle Kessner who has worked tirelessly to provide support to CDH families since 1999. Although she would say that she couldn’t do all the work by herself and that she relies on other volunteers to get the job done, Danielle truly is the linchpin that holds CDH Australia together and drives our services for families. She responds to countless emails every week and manages numerous projects that are always going on at the same time. Danielle was recently nominated for a Pride of Australia medal that honours ordinary Australians for personal achievement and outstanding endeavour in their communities, a sentiment that the many, many families she has touched would agree with.
The history of CDH Australia is outlined in the timeline below.
1999 – Danielle Kessner volunteers as the first Australian representative for CHERUBS supporting around 10 Australian members.
2001 – The Australian group call themselves CHERUBS Australia, create a logo, set up a website and send out their first newsletter. The inaugural annual forum, then called Get Together, is held in Melbourne. The subsequent forums, called CHERUBS Australia Annual Forum (CAAF), are held in:
- Brisbane in 2002
- Perth in 2003
- Sydney in 2004
- Melbourne in 2005
- Brisbane in 2006
- Sydney in 2007
- Perth in 2008
- Melbourne in 2009
- Brisbane in 2010.
2002 - With there being many differences between the USA and Australia in CDH treatments and terminology, the first steps were taken to set up CHERUBS Australia Organisation as a support group in its own right with the valuable help of CHERUBS who provided copies of their documentation to use as guidelines. This also allowed us to begin the process of becoming an official entity so we could raise much needed funds.
2006 - After much frustration given the complexities of incorporation for a national group, which is not as straight forward as a state based group, a small committee was eventually set up to research the best way to become an official organisation. Later that year Corrs Chambers Westgarth Lawyers provided pro-bono services to assist.
2007 - Work was undertaken to evaluate the best company structure, develop a constitution, recruit directors and recreate all documentation. As One Advertising & Marketing provided much work pro-bono (and continue to provide support to CDH Australia) to create new branding, a new logo and publication design.
2008 – CHERUBS Australia Organisation was officially registered as a Health Promotion Charity with ASIC and obtained Deductible Gift Recipient status from the Australia Tax Office on 28 May. Five Directors formed the Board of Directors: Danielle Kessner as President, Fiona Rice as Secretary, Tanya Quirk as Treasurer, Jo Kjaersgaard as Volunteer Coordinator and Lynda Viset as Fundraising/Funding Coordinator.
2009 – The number of Board Directors was increased to seven directors to spread the work load. The elected Directors were: Danielle Kessner as President, Kris Ross as Vice President, Fiona Rice as Secretary, Kath Murphy as Treasurer, Sharon Knott as Volunteer Coordinator, Margaret Polacska as Fundraising/Funding Coordinator and Ali Moxham as Projects Coordinator.
2010 – Members elected to change the organisation’s name from CHERUBS Australia Organisation to CDH Australia, and the new name becomes official on 23 March. The rebranding in preparation for the launch of our new website was driven by the opportunity to:
- change our name to something that is easily recognisable and remembered for new families and medical professionals seeking information and support in our region. CDH Australia clearly states that our group is for people affected by CDH, whereas our experience in Australia showed that the name CHERUBS required explanation as to what it stood for and was harder for people to remember the connection to CDH.
- dispel the confusion amongst families regarding the organisational relationship between CHERUBS, CHERUBS UK and CHERUBS Australia Organisation. We operate as separate groups yet families often believed if they are a member of one group they were a member of all three groups. One of our aims as an organisation is to increase membership and we believe by having an independent name, it is obvious that we are a separate organisation and therefore have separate membership.
2011 - Our first annual awareness day called Sunflower Sunday was held around the country
Looking to the future - CDH Australia looks forward to expanding services in the future to CDH families and to working with medical professionals to increase research activities by raising the necessary funds through fundraising and funding applications. Some future activities we plan to achieve include:
- complete writing and publish support booklets specifically for surviving families, grieving families and families facing difficult decisions to complement our existing booklet for expectant families.
- undertake Project SUNRISE – Support, Unite, Nation-wide, Respect, Inform, Sustain, Educate – words that describe the benefits we aim to achieve by producing an e-learning program to provide quality training for our volunteers who are located in all parts of Australia.
- work towards gaining funding for a research assistant to help medical professionals process and disseminate data regarding CDH.
