As some of you know, I live with a rare muscle disease, Pompe Disease. This affects 70 Australians and is caused by a deficiency or lack of the enzyme acid alpha-glucosidase. This enzyme breaks down excess glycogen, which usually accumulates in the muscles. Infants born with Pompe disease may produce very little or no enzyme and may die within weeks of birth if they are not given immediate and ongoing enzyme replacement therapy. Currently, it takes 3-6 months in Australia before infants are diagnosed. On average, two babies will die annually in Australia due to delays in diagnosis and treatment.

Australia is behind the world when it comes to newborn screening. I will run 100 km in August to raise awareness and funds for Newborn Screening for Pompe Disease. By doing this, I aim to show how treatment can lead to a healthy life. Please help me make a difference by donating to the foundation; every donation, big or small, goes a long way. I understand that not everyone is in the position to support this cause through funds; however, sharing this page and raising awareness for Pompe Disease and Newborn screening is equally important and appreciated.

Thank you all in advance.