Our Stories

Catherine

Those who know me will remember a very normal girl growing up, who like many others was not very good at sport, pretty slow at running and maybe a little clumsy.

I have always been a very active person in general and in my 20s and very early 30s would go out dancing all night with friends. I fell pregnant in 2004 and very slowly things began to change.

Tarryn

Diagnosis or not, Pompe has had a large impact on my life over the years. It’s not only just the big things but the small things!

Leanne

I realised that I had had an accident which had camouflaged the real cause of my body’s deterioration.

About Pompe

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Newborn screening and early treatment is vital to ensure that Pompe patients get the best chance for life.

3

Infants born with Pompe every year in Australia

15 Years

No new diseases added to Australian newborn screening in 15 years

$10

A $10 donation can help us to reassure a parent that they are not alone

One

One drop of blood is all that is required for a pompe diagnosis

Community support and awareness is vital to our small group of Australians suffering from Pompe disease.

All donations are greatly appreciated.

Donations over $2.00 to the Australian Pompe Association are tax deductible.

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Contact your local MP to help raise awareness of Pompe Disease and the need for a newborn screening program.

We’ll send a letter on your behalf to your local MP explaining why it is so vital to catch Pompe disease early in a newborn screening program.
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