Fighting for the Right to Cure

Why is it that once a charity becomes big they lose sight of what is really important and focus on dragging down other charities that are working towards the same goals?

I know right now the big broohaha for the Susan G. Komen foundation is that they took funding away from Planned Parenthood which means that thousands of lower income women are not going to be able to get scanned for breast cancer. This happened because, according to SGK, Planned Parenthood is under federal investigation. An investigation that many people consider to be a waist of time. Not to mention the fact that SGK is still giving funding to Penn State even though they are also currently under federal investigation.

No, SGK really took away the funding because their current president is playing the political field. The funding has been taken away because of the political favorite pop question of abortion and a woman's right to choose. It is no secret that Nancy Brinker falls in line with the extreme political religious right that is trying to squash women's right to their bodies.

Just today, though, SGK reversed their decision. Of course, what they really said was that Planned Parenthood would not have to give back the funding they already have, while they are free to apply for a new grant from SGK it is unlikely that they will get one.They weren't even really apologizing, they were backpeddling. They didn't want to lose public face.


Of course, the good thing about this is that Planned Parenthood has seen several large donations come from people and groups that have never donated to them before. On the flip side, so has SGK.

SGK is getting more money from the political side that is against abortion because apparently these people have forgotten that breast cancer and abortion have no correlation and the grants being given to Planned Parenthood were earmarked for mammograms and breast care health. Apparently these people are pro-life except for when it comes to low income women that have cancer.

Something that has not really been addressed, though, is that SGK has been a charity bully for years and this is where this post connects with vasculitis and Wegener's. They have this habit of looking for any other charity that uses the words "the cure" in their slogans and spending donated money on millions of dollars worth of legal fees to get these groups to change their slogans. This is what happened to the VF last year. Our slogan used to be "Sticking Together for a Cure" but now we don't have one.

Some of these charities are very small and the ensuing legal  battles put them under. SGK also goes after any charity that uses the color pink. It's completely fine that they stole the idea for ribbons from the AIDS Foundation, though.

Susan G. Komen has forgotten what it is to be a charity. This is why they are so focused on putting out pink product, many of which that contain carcinogens that help cause cancer. They are more interested in making money for themselves and getting name recognition than actually helping people that are in serious need of it. I am almost glad that the real Susan G. Komen is no longer with us so she can't see what has become of the charity set up in her name.

These other groups are trying to help people. They are trying to raise research money, sometimes for breast cancer, sometimes for other cancers, sometimes for disease that are little known and have higher morbidity rates than all cancers. To paraphrase Colbert, these people can be saved, fixed, or healed, but don't cure them.

I guess it doesn't matter, though. So long as SGK can still make their money and support their political agenda.

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) http://bit.ly/uAP3CB 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!