Research Funding

So, chondrosarcoma is one of several rare cancers. The drawback to having a rare cancer is that there is seldom a lot of research about it. Scientific research in general is often expensive and time-consuming, and few organizations are interested in spending time and money on the unusual stuff.

My big questions if this turns out to be low-grade chondroscarcoma are:

1. Should they go back in and remove the 5-10% they weren’t able to remove during the first surgery?
2. Should they follow up either the initial or second surgery with proton radiation therapy?
3. Would it make more sense to do nothing and take a “wait and see” approach?

There are various research articles out there about chondrosarcoma, but the answers to these questions aren’t 100% clear for me just yet. There are different types of skull-base chondrosarcoma and different degrees of severity for each type. The research I’ve read implies that removal of as much chondrosarcoma as possible followed up with proton radiation therapy provides the best outcomes possible. What I haven’t been able to determine is to what extent that is the case if the type of chondrosarcoma is myxoid vs. clear cell vs. dedifferentiated, etc.; or grade one vs. grade two or three of any specific type.

I’ll cheerfully take on another month of relatively unpleasant recuperation and some potentially aggravating side effects if it is likely to buy me another decade or two of fun time with my family. The challenge is figuring out whether this is likely to be the case.

Which brings me to the broader and more important issue: what would it take to allow individual people to contribute more clearly, personally, and meaningfully to scientific efforts that are worthwhile but might otherwise be underfunded? I know some scientists have been using Kickstarter or similar sites for this kind of effort, but it seems like it would be helpful to have something more specific, where you’d be able to validate the scientific legitimacy of the research effort and approach; where the outcomes, data (depersonalized), and follow-up documentation would be readily available to everyone after the research is complete; and where artists, athletes, and others can reach out to find ways to contribute to various efforts; and where experts in their fields can find new ways to collaborate.

This would be nice for a lot of reasons. For a lot of everyday people, science feels like something unobtainable or foreign… scientists have expertise that is so deep it is hardly understandable. On TV and in movies scientists don’t even act like human beings most of the time. They may be villains or experts, but they are almost never identifiable regular people who have just worked hard because they are curious or care about something.

If there were a site where regular people could go for an understandable explanation of how they can use their own skills to contribute meaningfully to a scientific effort they feel is important, it helps them relate to science in a way that is beneficial to everyone. If I like to sew and would like to raise money for specific chondrosarcoma research by spending my free time making pretty tote bags and selling them online with 100% of gross profits going to my selected research effort, that’s a great win. I can spend more of my free time making a contribution to science, and when I sell the tote bags on the “contribute to science” website, people who go there will know that whatever they are buying is making a real difference for humanity. Why buy a tote bag somewhere the main goal is to make an investor rich when you could instead buy a tote bag somewhere the main goal is to add to humanity’s success by contributing to future generations’ knowledge? Also, smaller, more individualized contribution efforts would allow scientists to study things that are more meaningful than whatever is most likely to make lots of money for some pharmaceutical company this month.

Anyway, that’s where my head is today. I’m looking for a service like a combination of  Etsy + Kickstarter + ResearchGate, with some very strict rules about how to establish legitimate research designs, how to validate results, how to handle human research requirements, and how to share post-research data for the broadest possible usefulness; along with additionally strict rules about how to set up and handle financial support efforts for research projects.