We Hope to make a difference

We hope that we can continue Nate's legacy and have Pompe Disease added to routine Newborn Screening here in Australia. May every newborn be given the best possible chance to fight Pompe Disease and lead a normal, healthy life. May they run around, play and laugh. We hope that no more Pompe families have to say goodbye to their babies.

We hope to make a difference.

Maddy and Jenna

Australia 

Keep moving with Pompe!

How does my life look living with Pompe?

It looks difficult from the outside. It feels difficult from the inside. Dis-ease = Not easy.

But when I think about my every day or week ahead it doesn't really cross my mind. My mind is filled with children, husband, family, friends, business, my dog, food shopping, exercise, sports, house cleaning, entertaining, concerts, movies, and catching up with friends. There isn't much room left!

At this particular time in my life I am happy. I feel positive. I feel fit, healthy and strong despite my legs being at their weakest.

Moving on with Pompe - Pilbara Style

Hello the Pompe Community

My name is Roly Parsons and I was diagnosed with Late Onset Pompe Disease in April 2018 and began ERT in August last year. I live in the Pilbara region of Western Australia. The name of the small city I live in is Karratha and it is about 1000 miles north of Perth - my nearest capital city.

I was lucky enough to be diagnosed relatively early in terms of symptom progression. An early challenge for myself and family (which include a set of triplets and their slightly older sister) has been the fortnightly commute to Perth for my ERT. Living in a very isolated city, I am forced to spend two days away from home to access the treatment. My wife and support team at home (and employer) have managed these regular absences extremely well.

Woodworking

On Pompe day I am going to spend the day at my woodworking club cutting some segments for my next wood turning project. If you are in Sydney drop by Western Sydney Woodturners and let us show you the friendship, equipment and expertise we have.

Raymond Saich OAM

Australian Pompe Association
P 02-9629-2842
M 0418-966-509
E rsaich@bigpond.net.au
W www.australianpompe.org.au

The Career / Wine / Life Balance

My Name is Renee Brown. Passionate wine drinker, Dog Lover, Wife and Mother. In that order. I'm 43 years old from Perth, Western Australia. I am diagnosed with late onset Pompe Disease. I manage a small, dynamic team at a winery in the Swan Valley, Western Australia.