aHUS Awareness Ball (KTDRA)
Donation protected
We are working on a campaign to raise awareness for aHUS so I thought I'd make it fun and organise a Ball to be held on 21 October 2017 and raise funds for Kidney, Transplant & Diabetes Research Australia in the process. (A copy of the official Authority to Fundraise from KTDRA is attached for your information.)
In January 2016, Gerry was diagnosed with an ultra rare life threatening blood disease called atypical Haemolytic Uraemic Syndrome (aHUS). This disease is so rare that depending on which report you read, it either affects one in a million or two in a million, and as far as we are aware, Gerry is one of 30 people who suffer with this disease in Australia and only 5 who also have it along with pancreatitis.
Ultimately, this diease attacks the kidneys and can also attack the other vital organs.
When Gerry was diagnosed, he went into hospital initally for the pain associated with his pancreatitis however it was soon discovered that he was also in advanced stages renal failure and a few days after admission, we were told he has aHUS.
There is only one available treatment for this disease in the form of a drug called eculizumab (which comes under the drug name of Soliris). This drug comes in at a cost of approximately AUD$500,000 per year per adult patient, which makes it unatainable for most people. We have been lucky enough that for the past two years, our PBS has covered the treatment for aHUS patients, however as of 31 December, this will change and everyone loses access. To keep things simple, there's a lot of background work involved and we are hopefull that those who need treatment are gained access, however we would like for the decision to stop treatment to be a decision between doctor and patient when it is safe to do so, with the patient being closely monitored and given the ability to regain treatment as and if required.
KTDRA is the research group of Professor Toby Coates, who is Gerry's renal specialist so we would like to raise funds in the process of raising awareness for the disease to help his team's tireless work with kidney disease and diabetes.
Details for the ball will be out in due course however if you are not able to attend the ball but would like to make a donation to help with the associated costs of planning the ball and to help us reach our fundraising goal of $100,000 for KTDRA, please give to this cause. If you would like a receipt, please ask and I will arrange to send one to you direct from KTDRA. Please note however that receipts may not be issued until the end of the fundraising period which will be after the date of the ball (21 October 2017) and could also be less the 5% GoFundMe transaction fee - I will await confirmation of this from KTDRA though as I will give them all details for receipts to be emailed or posed.
http://ahusaustralia.org.au/adelaide-father-of-two-calling-for-a-fair-shot-at-life-october-5-2016/

In January 2016, Gerry was diagnosed with an ultra rare life threatening blood disease called atypical Haemolytic Uraemic Syndrome (aHUS). This disease is so rare that depending on which report you read, it either affects one in a million or two in a million, and as far as we are aware, Gerry is one of 30 people who suffer with this disease in Australia and only 5 who also have it along with pancreatitis.
Ultimately, this diease attacks the kidneys and can also attack the other vital organs.
When Gerry was diagnosed, he went into hospital initally for the pain associated with his pancreatitis however it was soon discovered that he was also in advanced stages renal failure and a few days after admission, we were told he has aHUS.
There is only one available treatment for this disease in the form of a drug called eculizumab (which comes under the drug name of Soliris). This drug comes in at a cost of approximately AUD$500,000 per year per adult patient, which makes it unatainable for most people. We have been lucky enough that for the past two years, our PBS has covered the treatment for aHUS patients, however as of 31 December, this will change and everyone loses access. To keep things simple, there's a lot of background work involved and we are hopefull that those who need treatment are gained access, however we would like for the decision to stop treatment to be a decision between doctor and patient when it is safe to do so, with the patient being closely monitored and given the ability to regain treatment as and if required.
KTDRA is the research group of Professor Toby Coates, who is Gerry's renal specialist so we would like to raise funds in the process of raising awareness for the disease to help his team's tireless work with kidney disease and diabetes.
Details for the ball will be out in due course however if you are not able to attend the ball but would like to make a donation to help with the associated costs of planning the ball and to help us reach our fundraising goal of $100,000 for KTDRA, please give to this cause. If you would like a receipt, please ask and I will arrange to send one to you direct from KTDRA. Please note however that receipts may not be issued until the end of the fundraising period which will be after the date of the ball (21 October 2017) and could also be less the 5% GoFundMe transaction fee - I will await confirmation of this from KTDRA though as I will give them all details for receipts to be emailed or posed.
http://ahusaustralia.org.au/adelaide-father-of-two-calling-for-a-fair-shot-at-life-october-5-2016/
Organizer
Theonie Roussianos
Organizer
Kidman Park, SA