PKD Foundation of Australia Launch
Last month I attended the launch of the PKD Foundation of Australia (PKD Australia), the only organisation in Australia dedicated to finding a cure for PKD.
As the Foundation’s inaugural Ambassador I was asked to give a short speech on the need for financial support of the research to find treatments and a cure for our disease. I spoke from the heart to make the point that people like me are doing the best we can to stay healthy but that no amount of clean eating and fitness can change the fact that PKD is a progressive and as yet untreatable and incurable disease. This is not a battle we can win alone so we need financial supporters to join with us in this fight for our lives.
It was wonderful to meet other people with PKD for the first time as most of us had been living it alone until now, except for on the online forums which aren’t quite the same as meeting in the flesh. The people I met were all around my age, professionally employed and active. Their stage of kidney failure, symptoms and PKD experience varied widely proving how this disease so differently affects each person.
It was also fantastic to see the first research grants awarded by the Foundation and to chat with the recipients. As a PKD sufferer you feel alone and wonder if anyone is doing anything to try to find a cure. It is hard to keep up to date with the science because a lot of information doesn’t seem to be freely available online. So it was incredible to converse with the people who are right at the coal face of current knowledge and research. I hope that it was just as exciting for them to meet us and see the human face behind the lives they are working to save. I asked each researcher to please keep me up to date with the latest news on their studies and in what’s going on with PKD so hopefully I can post this info up onto morethanpkd.com regularly.
For more info about PKD Australia and how to can provide support, please visit www.pkdaustralia.org
© morethanpkd.com | 2015