Fundraising for research

[Beck]

Does anybody know of any organisations that are currently undertaking research into Wegeners? I would like to start some fundraising and donate the proceeds, I haven't been able to find anything for here in Australia. If anybody has any information would be greatly appreciated.

[Pete]

Hi Beck,

You might want to nose around here to see if they can steer you onto anything that meets your need: Vasculitis Foundation

[drz]

Does anybody know of any organisations that are currently undertaking research into Wegeners? I would like to start some fundraising and donate the proceeds, I haven't been able to find anything for here in Australia. If anybody has any information would be greatly appreciated.

The major clinics like Mayo clinic have several studies underway on Wegener's (strike that) GPA and most other diseases too. Can you volunteer for any research studies where you get treatment?

[Beck]

Thanks for that I will check out the Vasculitis Foundation, unfortunately there are no research studies in Perth. I have been doing volunteering and fundraising for a while but for other causes, recently I decided I would like to focus on Wegeners and turn a negative situation into a positive one and hopefully make a difference.

[mishb]

Hi Beck and welcome to the forum - from another Aussie.

I don't know of any in Australia where you can donate the money to......maybe the Royal Melbourne Hospital - they have a vasculitis research facility.
Maybe the Royal Perth have something similar.

The Vasculitis Foundation Australia website takes you straight to the American organisation.

Thankyou for waiting to do this

[gilders]

Research

Not in Oz, but it's a great foundation that also pays for research. They also provide a log cabin for people suffering with vasculitis diseases to use for up to a week a year (for free).
The people that run it are the parents of a 16 year old who died from WG. It is likely that had WG been diagnosed earlier she could have survived. They were shocked to discover that in the majority of cases WG is not a definite death sentance if caught early enough. The parents want to make sure that this doesn't happen to others.