Wednesday, November 16, 2011

Research, Research, Research

Alright. I've spoken about this many, many times. Most recently in my rant about Dr. House and his horrible medical skills. Vasculitis in it's many forms needs MORE RESEARCH.

But this comes with a catch. Research can't happen unless there is money. When  all 15 forms of vasculitis are considered orphan diseases they aren't getting much money from the government for research and when we are competing with uber giants in the charity arena such as the Susan G. Koleman Foundation who, by the way, tried to sue the Vasculitis Foundation for having the audacity to use the word "cure" in their slogan (apparently if more than one medical charity uses that word it becomes "confusing for donators", come on) we aren't getting much attention at all.

It always comes down to teh monies.

The good news is that the Vasculitis Foundation has been put among the Chase Community Giving selections. This is something that Chase does every year where they have people on Twitter and Facebook vote for their favorite charities (divided into larger charities and smaller charities). The charities that make it into the top 100 get $25,000 each while the top three charities get a larger portion than that (I think those ones get a part of $3,000,000).

I am not sure if you have to be part of facebook or twitter (please try the link even if you aren't) if that link doesn't work there is an event set up that can send you to the right place Vote for Vasculitis! All you need to do is click 'Vote' (from facebook you need to allow the Chase Giving app first) and you will have made a huge difference in someone's life.

Because we are so used to not getting much money, the Vasculitis Foundation is good about making what they do get stretch. We are hoping to use this money for research and support for patients with vasculitis. This means anyone with Behcet's Disease, Buerger's Disease, Central Nervous System Vasculitis, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Henoch-Schonlein Purpura, Hypersensitivity Vasculitis, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, Polymyalgia Rheumatica, Rheumatoid Vasculitis, Takayasu's Arteritis, and Wegener's Granulomatosis.

This picture might be funny, but it is true. As a patient I know more about my disease than most doctors. 

Research helps us find new treatments, causes, and hopefully a cure. Support helps patients understand their disease and helps patients get to the few treatment centers located around the world. Support can also help get the word and disease pathologies out so more doctors recognize symptoms and less patients die unnecessarily. 

Voting ends on the 22nd!

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