Kaye,
I hear your frustration. I know the statistics are unacceptable, especially for Ewing's sarcoma. It is important that we, our friends and family know that supporting a "cancer charity" is not the same thing as supporting the research that sarcoma patients desperately need. The GOOD NEWS is that strides are being made by everyday people to get the research funded. That is what
Team Sarcoma was about this year, and that is what the
Liddy Shriver Sarcoma Initiative is doing, along with many other small groups of people. I raised over $3,000 from my friends and family! Next year there will be more opportunities to do local Team Sarcoma events like this. I know it is awful that the victims and families have to do all of this themselves, but it is gradually working. I am getting to know more people in the community and "learning the ropes" so that I can provide all of you better information and understanding about research and awareness efforts.
Tell your story. Tell it in as many ways as you can to as many people. You can tell it to the newspapers, on the web, and to your friends. I am working on creating an e-mail that patients can use to send to their close friends and family explaining more about what sarcoma is, what is being done about it, and what needs to be done. Many of my friends and family didn't understand really what I was dealing with until I sent them the
sarcoma facts in the mail. I actually had family members call me and thank me for the letter and for helping them understand why I am doing what I am doing here.
Sarcoma Awareness week is the second week in June, and we will be doing A LOT for it next year. I already have ideas floating around in my head, so they will get better and better!
Sarcoma's ribbon color is yellow, which I think is ridiculous, because there are way too many yellow ribbons floating around. I believe instead that we should find other ways to promote sarcoma awareness, like the
Sarcoma Knows No Borders wristband, which the awesome blue swirled color of a sarcoma stained slide. The Brian Morden Foundation has a
blue wristband for Ewing's sarcoma/childhood cancer research.
Don't give up. The numbers can be scary. I guess I figure this cancer will take me out eventually, but then again, I know something will. I guess I'm just trying to tell you that you aren't alone. I have recently been appointed to the
Sarcoma Advocacy Advisory Committee, where I will be taking issues that are important to US and writing articles about them. We will keep sarcoma in the spotlight.
Much HOPE,
Author