What is Your Field of Dreams?

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Field of DreamsIt occurred to me today that I don’t really get to talk to our supporters enough. Working on Dragon Master Foundation has turned into a full-time volunteer job for me, and most of the time, my head is down on one project or another. The work doesn’t stop coming, but I am so thankful to be in this position – doing this on behalf of cancer warriors. I wanted to stop for just a moment today, and let you know what your support has made possible this week. (And yes, it is only Tuesday!)

You helped give encouragement to a researcher who has developed a program around brain tumor tissue donation. We will be sharing a lot of his work over the next few months, but sometimes, they just need to hear that their work matters. As he told me about the extremely sacrificial gift he works with in his lab, I could hear the emotion in his voice. Tears gathered in my own eyes as I thought about the sacrifice our family has made, and I hope you all know that giving families this final way to make a difference is a truly valuable gift.

You helped gather feedback on the recently launched research platform, Cavatica, from a man who has dedicated most of his nearly 70 years on this planet to cancer research. He spoke with wonder in his voice of the things he is able to accomplish with this technology – things he never thought possible!

You helped give hope to a group of innovators who are developing a big data algorithm that can make treatment recommendations based on a patient’s DNA. They had been struggling to find the amount of data needed to test their theories, and now they have a source for their work.

These were conversations filled with hope, and that is what we are funding. When we started Dragon Master Foundation, it was because we had some audacious ideas about how to help researchers. Less than four years in, we have accomplished so many of the goals we set out to achieve. There is a real-time, open access platform where hospitals can share genomic and patient data. As I type, there are more than 15 hospitals sharing that data with agreed upon data standards. That alone is more than most people thought would be possible. Like the movie Field of Dreams, this is a real life “if you build it they will come” situation.

Which leads me to the best kind of problem to have. We can’t seem to fund the progress fast enough. We have delivered a tool to the nation’s top doctors who are eager to use it, but we need to fund the data to go inside. Putting the data into Cavatica means truly empowering precision medicine. It means we will be on our way to saving lives. If you’ve ever faced cancer, for yourself or a loved one, then you know that today matters.

There’s another great quote in Field of Dreams that applies to this situation. Archie Graham says, “We just don’t recognize life’s most significant moments while they’re happening. Back then I thought, “Well, there’ll be other days”. I didn’t realize that that was the only day.” It’s easy to let days slip by without taking action, but one day, there won’t be any more chances. We have to seize the opportunity now! Not because there won’t still be data to add tomorrow, but because there are lives being lost today. Every day is life or death to someone. So let’s work with urgency now to save more lives tomorrow.

 

#Cavatica Cancer Research Database Has Launched!

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The day is finally here, and I am so excited! Today is the day the beta version of Cavatica launches to the cancer research world. A dream we had almost three years ago is coming true today. It’s not done. Technically, it will never be done. It will always be adding new patients and more information. Putting that aside, it isn’t as “done” as we want it to be. There is more functionality to add. There is plenty of DNA sequencing yet to be completed. But today, there is a pretty awesome database that is already unlike anything else cancer researchers have had access to before.

If you know a doctor or researcher, please tell them about this awesome resource. We will continue to build it out and make it better, but I think they will be blown away – even right now. (Say those last three words in your best Southern accent. That’s the only way to truly give them the emphasis they deserve.)

Here is the official press release:

The Children’s Brain Tumor Tissue Consortium (CBTTC) and the Pacific Pediatric NeuroOncology Consortium (PNOC) conclude Brain Cancer Awareness Month of May with the announcement of the Beta launch of Cavatica, a new cloud-based environment for securely storing, sharing and analyzing large volumes of pediatric brain tumor genomics data.

Cavatica will, for the first time, allow doctors, researchers and data scientists unparalleled access to pediatric brain tumor genomic data paired with a suite of analysis tools in a cloud computing environment that enables scalable, faster and more robust research. Upon its full release, Cavatica will host the largest standardized, integrated, and quality-controlled genomic database of pediatric brain cancer genomic data.

Working with Seven Bridges, a biomedical data analysis company, the eight CBTTC site members and 15 member hospitals of PNOC are further fulfilling their commitment earlier this year to the White House Precision Medicine Initiative (PMI) with the launch of the Beta version of Cavatica being announced today. The Beta release will be open for subscribed end-user input and will be iteratively enhanced by ongoing implementation of advanced platform features and deposition of additional data sets over the coming months. These datasets will include additional pediatric cancer supporting pan-cancer pediatric data analysis in partnership with additional consortia. including the SU2C-St. Baldrick’s Pediatric Cancer Dream Team.

Sign up for access to the Beta release of Cavatica is available for researchers and data scientists by going to cavatica.org.

For more information or to schedule an interview, please contact the CBTTC at CBTTCadmin@email.chop.edu