Friday, March 27, 2015

Come on humanity, let's get it done!


My heart is as heavy as a black hole right now. Being a long-term survivor of a devastating and rare disease is REALLY HARD.  When all you can say to someone who was told that they have metastatic disease after 5 years of being NED is that you will send them positive thought’s, it’s unacceptable. When people reach out to you and all you can give in return is a sympathetic voice, it’s unacceptable. IT IS UNACCEPTABLE that we as a species have not put more effort into bringing this disease down. We can do better, all of us. We can turn off the TV for a few minutes a day and figure out what we can do with our unique skill sets to do better. We can redefine the way that science is “tackling” cancer. When scientists care more about high impact papers, and getting tenure than they do about curing disease, it’s UNACCEPTABLE. I have seen it first hand folks, and it doesn’t work. I do not believe that the current structure of PhD --> Postdoc --> Junior faculty --> Desperation for tenure --> More desperation for R01 --> meaningful but non-reproducible results that will likely not lead to cures = a viable option if we as a species are even remotely interested in curing disease. We need to break down the silo’s, collaborate more, initiate HUGE global efforts that will allow something more like PhD+Patient+MD+Mr & Mrs interested --> Big Data --> Resources for everyone to interpret --> much deeper knowledge base --> meaningful data that can be interpreted by all --> cures. Let’s figure this out. Please, let’s come together.

6 comments:

  1. Corrie, You and our scientists are our greatest hope, however, that does not protect us from the pain and anger that happens when we lose a friend or a loved one. Yes, we are desperate and afraid - that is also unacceptable. Thank you.

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  2. There is another way and some of us have seen the light! You, my friend a blazing a new trail!

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  3. Corrie , I agree with you that our present system for research is broken. I believe that that focus on why we are doing research is lost in the race for publications and career advancement. Basic researchers are very far removed from patients and there need to be a better connect/ collaboration between researchers/doctors/ patients so that we all have a better perspective of why we are doing what we are doing...

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  4. I agree wholeheartedly and I will not even try to soothe you with platitudes about progress. I will remind you that you and I, like MANY, MANY others are linking arms to make these things happen. We are the solution, ALL of us from every 'discipline' of patient, provider, researcher, caregiver. The fate of the world would be in sad shape if it depended on my research skills but I will talk the talk and walk the walk doing what I do best - bringing the right mountain-moving people together!

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  5. Preach it sister!! I know your feelings all too well...sending positive thoughts, prayers, etc. just don't cut it when I want to DO something but have no answer to offer :(

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