All individuals living with an IEM (Inborn Errors of Metabolism) are leading a life at full potential, not limited by choice or resource.
The MDDA educates, connects and enables individuals and families living with an Inborn Error of Metabolism (IEM) – ensuring more informed choices and a better quality of life.
Achieving positive health outcomes for individuals living with Inborn Errors of Metabolism (IEMs), and requiring life-long metabolic dietary management skills, resources and support.
The Great Protein Challenge is a fundraising campaign that helps Australians support kids and adults living with inborn errors of protein metabolism such as PKU – a rare genetic disease affecting approx. 1 in 10:000 babies born each year.
PKU is detected by the newborn screening heel prick test performed on every baby born in Australia within 72 hours of birth. This test also detects other protein and amino acid related rare metabolic conditions, with PKU being the most common protein related condition.
This May many Australian’s will take the Great Protein Challenge, walking in the shoes of a PKU person for a day to understand the importance, complexity and difficulty of managing the disease. The challenge of 10 grams of protein in a day has been set as a modest threshold and is MORE than double the amount a classic PKU individual can tolerate in a day. With no known cure for PKU, a strict and vastly limited diet is the only way to manage the disease and avoid irreversible brain damage and other neurological and psychological health complications. This challenge will provide only a glimpse into the complexities of the condition.
More work is needed to be done in the area of research and finding/getting access to new treatments and hopefully one day a cure for this disease. In the meantime ongoing education and awareness helps provide the necessary understanding and support this rare group of individuals need to live their life to the fullest whilst avoiding the damage the disease can cause.
All funds raised will go towards further research, support programs and resources to help enable every person faced with this diagnosis lead a life of full potential and optimal health.
We thank you for your support and wish you luck in the challenge. Whether you PLEDGE or PLAY or DO BOTH – your participation will go a long way towards supporting people with PKU and other rare metabolic protein disorders.
The MDDA is the national support association for Australians living with Inborn Errors of Metabolism. Our secretariat is funded under the Health Peak and Advisory Bodies Programme, and all other resources are volunteer with all monies raised via fundraising and sponsorship put towards research initiatives, programs, educational resources, dietary management tools and events in support of the families living with the condition.
MDDA is endorsed as a Deductible Gift Recipient (DGR). All donations over $2 are tax deductible.