Biden Cancer Initiative and ISPNO
July 6, 2018
A note from Dragon Master Foundation President, Amanda Haddock
“The last couple of weeks have been a whirlwind of activity, but that only goes to prove how in demand our efforts are becoming. We have gone from a time when people thought sharing data was crazy, to the current day where those same people are asking for our help to share data. It’s very gratifying, and you have played a major role in helping us get this far. Without the early help of our visionary supporters, we wouldn’t be nearly this far along!
We were part of an elite group of foundations who were invited to Washington, D.C. to participate in a meeting hosted by the Biden Cancer Initiative on June 27th. Dr. Jill Biden led off the morning with a very personal greeting, and we spent the day learning about existing programs and how we can augment those for the greater good. You can probably imagine how excited I was when someone in the room brought up Cavatica - and for once, it wasn’t me!! I made several connections with some rare cancer foundations who need a place to put their data, and I was particularly excited to meet Jessica Morris, a GBM survivor who started the Our Brain Bank app. Jessica has done some amazing work giving patients an easy way to share their day-to-day data, and I think that will be something we see incorporated into patient care very soon.
From D.C., I flew directly to Denver for the International Society of Pediatric Neuro Oncologists meeting. This meeting only happens every two years, and it only takes place on this continent every 6 years, so it was quite the occasion. Richard Haddock was able to meet me there so we were able to be in more places than one. There were over 1,000 attendees, all with the singular focus of putting an end to pediatric brain tumors. Much of our time was spent in one on one meetings, and I can tell you that precision medicine initiatives are a strong area of interest for researchers, as are data sharing initiatives. Researchers from around the world noted that patients are ultimately in control of their own data, so if you want your data to be shared in an international platform, that is your right. We are so thankful that so many patients are making that choice and sharing data in Cavatica.
I met with David Jones whose lab in Heidelberg, Germany is doing some amazing work. He shares data in Cavatica, and seemed to like the interoperability it offers. I also met with a young researcher, Abhishek Puri from India who is interested in writing code to help patients report data. I was able to connect him with Jessica, so they are now working together instead of duplicating efforts. We met with a wonderful foundation from Australia that just learned about Cavatica and wanted to know more about how they can support the data sharing efforts. And of course, we were able to work with some of the foundations that we already have established relationships with like Swifty Foundation, Lilabean Foundation, and the Ross K. MacNeill Foundation.
Patient families were invited to this conference for a special day of sessions directed at their needs. We were so honored to meet some of these families and offer our insights as parents who have walked that path. I remember searching for answers when David was alive, and finding so very little hope. Because of the work you have helped us do in the last five years, I can honestly say that there is now hope for these patients to have far better outcomes. We are so far from done, though. We are still losing about five children a day to brain cancer, and that number skyrockets to 46 when we look at adults. But with each patient we can add to Cavatica, we get a slightly clearer picture. I truly believe we are fast approaching the day when that data will point us toward a more certain path for successful treatments. I hope that you can talk about your support of Dragon Master Foundation with pride because you are helping us change the way research is done!”
