PKU Parent – Victoria [email protected]
Monique’s leadership has been the driving force of the MDDA since October 2012. She is a passionate, proactive and dedicated advocate for our cause. Monique’s son Charlie has PKU and he was only 2 years old when Monique took up the role of MDDA President, since then her drive, innovation, vision and commitment have completely transformed the organisation and the opportunities for people living with PKU and other IEMS in Australia.
Monique continually looks for gaps in treatment and support of the Australian PKU/IEM population then seeks solutions focused to achieve the best overall health outcome.
PKU Parent – Queensland [email protected]
Louise’s strengths of listening, insight and her ability to empower all of those around her inspires our team. Louise plays a crucial role in our organisation leading our systemic advocacy and education. Louise’s first child Eva was diagnosed with PKU 16 years ago. Although a support group wasn’t exactly what Louise was wanting to intrench herself in she saw how she could make a difference in volunteering and supporting other families just like hers.
Louise has established effective relationships with a wide range of stakeholders including all levels of government, the Department of Health, health professionals, private national and international bodies and the wider PKU/IEM community. She has led MDDA’s successful lobbying and advocacy campaigns for access to medicines and support programs for the PKU/IEM community for over 10 years.
PKU Parent – Queensland
Paige didn’t run for the hills when the position for Treasurer became vacant. She has held this role for over 11 years as well as involving herself in all other areas of the MDDA. Paige’s daughter Sophia was diagnosed with phenylketonuria through the Newborn Screening Program. Shortly after Paige sought out the MDDA and after seeing the value of the association she immediately put up her hand to help out wherever needed. Paige maintains our monthly accounts ensuring appropriate procedures are in place to keep things running smoothly and that there are no surprises. She prepares our annual budget and arranges our end of year annual review. Paige and her family escaped Victoria during the pandemic to return to the gorgeous FNQ where her daughter Sophia was born.
Dr Bianca Albanese
PKU Adult – New South Wales
Bianca’s passion is infectious as is her laugh! Her commitment to involve herself in all aspects of the association and her willingness to support and advocate for PKU and the wider IEM community all while completing her PhD in 2022 is truly admirable. Her drive for development and to create change led her to join the MDDA as an executive member. Bianca is a huge inspiration to the IEM community both nationally and internationally. She openly shares her PKU journey, the good, the bad, the challenges and the opportunities to encourage and inspire others. Bianca is a Biomedical Engineer working for NeuRA. Bianca has travelled extensively and has a huge repertoire of stories and recommendations. Give her a call if you are looking for a good restaurant or low protein foods options in Brazil, Istanbul, Indonesia, USA, Europe.
MDDA Office Personnel
Jenny loves a chat and she’ll tell you that her favourite part of her role is talking and getting to know the members of the IEM community. She has emersed herself with the association since 2008. Jenny oversees the implementation of the operational objectives, policies and programs of the association. Her passion and involvement to support the IEpM community are valuable, we are fortunate to have her onboard. In 2022 Jenny became a first time Nanna and makes any excuse to catch up for cuddles with her new grandson Ollie.
Patient Pathways Telehealth Care Management Nurse
Jo has over 30 years of experience in nursing and has helped many patients navigate the complexities of the health care system. She has a diverse background across paediatric, adolescent, aged care and family centred care with extensive experience in chronic care. Jo provides an additional layer of practical and emotional support, education and connects patients to existing services including clinical trials. Jo loves to get away in her caravan whenever she can. You might see her zipping around your town on her new e-bike.
Communications & Digital Media Administrator
Bella has many talents with a can-do attitude, she is our IT go-to when the computer says ‘no’. Bella completed a Batchelor’s degree in Professional Communications. She brings a fresh approach to our communications and digital events strategies while managing the MDDA website and the digital event services at our annual conference. Bella’s brother has PKU, so she understands how important it is to effectively communicate and represent MDDA’s mission. Bella can’t wait to pack her backpack and travel overseas again with her friends
Special Project Management
New to our team Mel brings her skills, creative ideas and her unique perspective that has helped us to advance the goals of our organisation. She brings our projects and ideas to life, taking ownership and keeping us on track. As a new mum to Ollie, Mel is enjoying those precious cuddles and looking forward to more than 4 hours of sleep sometime soon!
We have an awesome team of general committee members supporting the Exec Team. They help because they want to make a difference. They provide support for the IEM Pathways and Peer Support programs. There’s always room for one more. Please get in touch if you would like to be part of our supportive inclusive organisation.
Special Interest Representatives
MDDA has established Special Interest Representatives for all IEpM in most states of Australia as an additional way to support to the wider community and involve our members in shaping our programs, support and advocacy work.
These volunteer representatives provide a lived experience, personal knowledge and practical help as well as providing support to others experiencing similar challenges that helps people to do the things they need to do to stay healthy. This peer support can be in-person, over the phone or virtual depending on location, individual and families of the IEM community live in all cites, towns, rural and remote areas of Australia.
We have volunteers offering peer to peer support to those newly diagnosed or living with:
Amino Acid Disorders
+ Maple Syrup Urine Disease
+ Tyrosinaemia Type 1
Urea Cycle Disorders (UCD)
+ Ornithine Transcarbamylase Deficiency (OTC)
+ Argininosuccinic Acidaemia (ASA)
+ Arginase Deficiency (ARG)
+ Glutaric Acidaemia Type 1 & 2 (GA1) & (GA2)
+ Methylmalonic Aciduria (MMA)
+ Propionic Acidaemia (PA)
+ 3-Methylcrotonyl CoA Carboxylase Deficiency (3MCC)
+ Isovaleric Aciduria (IVA)