The everyday running of AusDoCC Inc is the responsibility of our Management Committee, which is composed of elected, voluntary members. All committee members have individual, designated roles and also belong to subcommittees. Committee members are in many different states of Australia and also in New Zealand.
At the Annual General Meeting (AGM), financial members of AusDoCC elect our committee for a period of 12 months. Members are entitled to a vote at this meeting either by their attendance or by a proxy vote available from the secretary. The 2016 AGM was held in Melbourne on October 24.
Meet our 2016/2017 Management Committee
Tanya is the mother of two children, Kody and Ellie. Kody (born 2005) has partial agenesis of the corpus callosum. Tanya and her family of four have just made the huge move back from Western Australia to northern NSW, where she will enjoy rural life near family and friends. She is negotiating new schools, homes and resources for her family.
Tanya has an extensive background in a number of roles including 20 years in building and surveying on the Gold Coast and volunteering for not for profit charities supporting families with special needs. Tanya would like to see AusDoCC continue to grow and become an organisation recognised for raising awareness and having a friendly support network for our members. She would like to see professionals recommending the organisation to other persons with a DCC for support and
information and for teachers and teachers aides to have a resource that will help them to teach our children.
Social Media Officer
Congratulations to Tina on becoming the new president of AusDoCC.
Kristina (Tina) is from Perth, Western Australia and the mother of three wonderful young men Connor, Hamish and Kyle. Connor (born 1998) and Kyle (born 2006) both have agenesis of the corpus callosum and coincidentally they also share a birthday. Tina, her husband, Alan and the boys all get on really well and have amazing family dynamics. Kristina’s great sense of humour keeps them and us, on track.
After a lonely journey though the ACC world with Connor, when Kyle was diagnosed Tina felt the need to connect with as many parents as possible.
She was unable to find a single support group for ACC in Australia. Facebook was a popular social network site so she decided to start an Australian Facebook group. Tina’s goal has always been to connect with as many Australian families with a DCC as possible.
Maree is the mother and full-time carer of Abbie, born in 1990. Abbie has partial agenesis of the corpus callosum, diagnosed at 21 months but largely ignored as she was also born without a pituitary gland and ACC was almost unheard of in Australia. Her journey has been very isolating as there was no information and the Internet was not very functional in rural Victoria in the nineties. When Abbie was 18, Maree discovered the US Listserve and suddenly many pieces of the mystery puzzle began to fit. Abbie and Maree have attended two American NODCC conferences since 2010 and have been able to make connections with other young adults, families and key clinical and research professionals. Maree was very excited to discover the Australian Facebook group in 2011 and attended the inaugural AusDoCC meeting in April 2012.
She loves the opportunity AusDoCC presents to get the story of ACC across to every nook and cranny of Australia so that the new generations of DCCers are supported and have information to guide them through the educational and medical mazes. Maree has also been inspired to study a Masters of Public health at Melbourne Uni and is halfway through.
Rebecca is Mum to 3 amazing kids, Joshua, Thomas and Maddison. Josh, now 17, was diagnosed with complete ACC at 37 weeks gestation. Rebecca has a background in childcare but has been involved in fundraising for more than a decade and is AusDoCC’s treasurer. She is a whizz with figures and is studying a Bachelor of Accounting part time in Adelaide. She enjoys working with numbers and masterfully keeps the AusDoCC budget in check.
Her journey with Josh has been very isolating like many others affected by a DCC. She and her family struggled to cope with a diagnosis that nobody knew about or seemed to have or understand. Connecting with others on the Facebook group has opened up her support channels and she is determined to help others connect and raise awareness of a disorder that seems hidden from the rest of the world. Josh is just beginning year 12 and is currently collecting profiles of children and adults with a DCC for a year long, school research project. He is also paving the way for future families to have more support and information and has a great role model to follow.
Niki's daughter, Abby was born in 2008 with an underdeveloped corpus callosum (dysgenesis of the corpus callosum). Niki has also been involved with AusDoCC from its inception because she wanted to create awareness and support that was unavailable when Abby was born.
Niki is married to Steve and they have two older children, Brodie and Tahlia. They live in south east Melbourne, Victoria and both work in real estate. Niki has been involved in fundraising for more than 15 years and is the key person for AusDoCC’s fundraising activities. She also advocates strongly for better facilities for people with disabilities, particularly more appropriate public places to change older children and adults with continence needs.
Linda runs a busy household which includes 5 of her 6 children and her husband, John. She also has a new grandchild who adds untold delights to the household. Their youngest son, Gordon was born in 2007. He has pACC and is currently attending primary school.
Linda has been active in many voluntary groups and coordinates AusDoCC memberships. She is the welcoming face to all new members receiving a Welcome Pack upon joining AusDoCC. While being record keeper for all meetups, she is also very active in connecting families in NSW and holds several family meetups a year.
Linda became a member of the AusDoCC committee to be involved in spreading our information across the country and to meet new families. She is always up for a cuppa and chat, and tries to offer this to new families in her area. If you are in the Sydney area send us a message. She would love to meet you.
Adult Liaison Officer
Abbie was born in 1990 and has partial agenesis of the corpus callosum (pACC). When she was 2 years old after an MRI diagnosing her P-ACC, Abbie's parents were told she would never learn to read or write. Since then she has completed primary school, secondary school (including VCE), studied at TAFE and has slowly but surely worked her way up to higher education at Victoria University. This year she is starting a Bachelor of Social Work at Victoria University. Everything for Abbie is at a slow and steady pace, one week or even one day at a time, but the support she gets from her mum and all the people who work with her, helps her to persist and develop. Abbie has many daily challenges due to her DCC and other health conditions, such as social difficulties, anxiety, spatial awareness, tremors, temperature regulation.... and much more! She gets lots of help and support to manage these things as much as possible. Abbie lives with her mother and her mini fox terrier dog Scout in Melbourne. Scout is Abbie's closest friend and often is a comfort for her. Abbie also has a 30 year old brother who is a musician and supports her as much as he can too.
Through being part of and working with AusDoCC, Abbie wants to spread the word about this condition in Australia. She aims to find and support others who are like herself, living with this rare condition and may be isolated and lost in society, particularly adults. Abbie hopes that her new social work course will also have some benefit in supporting and connecting with a growing community of people with a DCC and their families in the future.
Michael has a nursing background and is currently involved in further tertiary studies at two universities. He has experience working in teams in professional environments, and a willingness to assist this community in whatever capacity he can.
Michael has great hopes for the future of this organisation, the greatest impact is perhaps our online presence once this is more established. He is looking forward to the development of the adult ACC community which as a adult with a DCC he wants to be a part of and help establish as well.
We welcome new committee member, Maja Palacios.
Maja lives in Perth Western Australia her husband, Andrew and two daughters Eva, aged 8 and Andie, aged 6.
Andie was born with complete agenesis of the corpus callosum which, in her case, is considered a part of an undiagnosed syndrome. Until discovering the AusDoCC facebook group in 2013 the family had found it to be a very isolated and unknown journey.
Maja has a background in applied science. She has worked as a lab technician and then a quality control coordinator in a laboratory for a major fertilizer company for over ten years. While pregnant with Eva, Andrew and Maja endeavored to start their own Mobile Heavy Haulage repairs company. They have been successfully running this company for 9 years.
Maja is a motivated person who has an artistic flair, Her family has a background in photography and graphic design.
Having a undiagnosed rare child with complex needs, Maja wants to contribute to raising awareness about AusDoCC and help bridge the obvious gaps in the system.
Sponsor Registry Officer
We welcome new committee member, John Jonker.
John lives with his partner, Anna, who has complete agenesis of the corpus callosum (ACC).
John is a groundsman who looks after a sporting complex for a local council. His interests include dog sports where he instructs in both agility and obedience at his dog clubs.
John is interested in learning more about ACC as well as helping people with similar conditions to Anna in their daily life needs.
Anna lives in Sydney and was born with complete ACC. She was diagnosed in early adulthood and grew up with several siblings. Anna completed nursing qualifications at Avondale College of Higher Education and has worked in nursing. She has a passion for dogs and dogs’ sports and is a volunteer obedience and agility instructor with local dog training clubs, as well being as a competitor in dog agility events. This has provided a vast opportunity for friendships and new skills.
Anna joins the committee to enhance the voice of adults with DCC and has been enthusiastic about being involved with fundraising and connecting other DCC adults. She was excited to find other adults with a DCC and is keen to make connections and help build a supportive adult community.
Melissa is a working mother to two children, a four year old boy and a one year old girl. Her son was diagnosed with partial ACC at 15 months. Melissa and her husband, Chris, were frustrated by the lack of knowledge and information about disorders of the corpus callosum, and their underlying causes.
After attending the inaugural AusDoCC conference in 2015, Melissa was amazed at the quality of speakers, the professionalism of the conference and the fact that it had been organised from the AusDoCC volunteers who were also predominantly carers of children or young adults with corpus callosum disorders. She welcomed the opportunity to join the AusDoCC committee for 2015/16.
Originally hailing from Australia, but living in New Zealand for 6 years, Melissa hopes that her involvement with AusDoCC can also benefit New Zealand individuals and families affected by corpus callosum disorders.