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 (IEM).
IEMs are genetic, meaning that they are inherited at birth and most are diagnosed through the newborn screening test. Because the disorders can be serious, early diagnosis and treatment are critical.
Treatment for IEMs involves a medically low protein-controlled diet, medicines and prescribed supplement. Infants who start treatment early in life can grow and develop normally. The recommendation is to maintain dietary management and treatment for life to ensure normal growth and development
This May and June many Australian’s will take the Great Protein Challenge, walking in the shoes of an IEM person for a day to understand the importance, complexity and difficulty of managing these rare diseases. The challenge of 10 grams of protein in a day has been set as a modest threshold and is MORE than double that many IEM individuals and can tolerate in a day. With no known cure for IEMs, a strict and vastly limited diet is one of 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 these conditions.
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 these diseases. 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 rare metabolic protein disorders.
The MDDA is the national support association for Australians living with Inborn Errors of Metabolism. Monies raised via fundraising, donations and sponsorship are directed 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.