Our People

Executive Committee


Monique Cooper

PKU Parent – Victoria

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. 

Her achievements and voluntary contributions to our community are many. A small selection of Moniques contributions include;

  • Creation of an innovative range of online tools to connect the PKU/IEM community (this came to life during the pandemic)
  • Led 2 parliamentary events
  • Drove the advocacy campaign for the reinstatement of the IEM Programme
  • Envisioned the ‘Faces of IEM’ campaign
  • Created ‘The Great Protein Challenge’ our major yearly fundraiser
  • Developing an Australian first low protein counting app for IEMs
  • Founding board member of the Global Association for PKU

Monique is the founder and managing director of her events management company Gener8 and holds a Bachelor of Business in Marketing. When Monique switches off you will find driving her kids around to all their activities, then relaxing by the pool maybe with a glass of her favourite Chardonnay in hand.

Vice President

Louise Healy

PKU Parent – Queensland

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.

Louise’s contributions to representing the PKU/IEM community include:

  • Led a successful consumer campaign for access to the first medicine available to the PKU Australian community
  • Formal submissions to Government, Commissions, Inquiries and regularity bodies
  • Participated as a witness at the Parliamentary Inquiry into approval processes for new drugs
  • Life Savings Drug Program medicine reviews
  • Provided expert consumer input to PBAC via consumer comments and consumer hearings
  • Represented consumer voice at government round tables
  • Advocating for international clinical trials to establish sites in Australia
  • Working to establish a PKU/IEM national registry
  • Created Zest – our Adult IEM Wellbeing & Vitality program
  • Founding board member of the Global Association for PKU

Louise has post graduate qualifications in psychology and runs her consulting and coaching business in the corporate sector. She is the Education and Advocacy Manager at Rare Voices Australia and a current member of the Queensland Genomics Community Advisory Board. Louise enjoys her precious family time, going on short get always when they can and taking her fur baby Pippa down for a run in the creek.


Paige Moore

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

Executive Officer

Jenny Briant

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

Joanne Campbell

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.

Special Project Management

Mel Briant

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!

General Committee

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

+ Phenylketonuria

+ Maple Syrup Urine Disease

+ Homocystinura

+ Tyrosinaemia Type 1

Urea Cycle Disorders (UCD)

+ Ornithine Transcarbamylase Deficiency (OTC)

+ Citrullinaemia

+ Argininosuccinic Acidaemia (ASA)

+ Arginase Deficiency (ARG)

Organic Acidaemias

+ Glutaric Acidaemia Type 1 & 2 (GA1) & (GA2)

+ Methylmalonic Aciduria (MMA)

+ Propionic Acidaemia (PA)

+ 3-Methylcrotonyl CoA Carboxylase Deficiency (3MCC)

+ Isovaleric Aciduria (IVA)