Dr. Mark Kieran, Lead for Pediatrics at Bristol-Myers Squibb
About Understanding and Collaboration
“I’ve been coming to this symposium now for a while and the most important aspect is to really broaden the understanding as to get the community to work together. DIPG is a relatively rare tumor, it affects a small number of patients around the world.
Bringing all of those investigators into one place and to a unified atmosphere where they can really begin to see not just what they’re doing but what others are doing and how they synergize, becomes a critical aspect of everything moving the field forward.
You can really begin to see the way people are beginning to ask questions, talk to each other, and the number of times you hear, “what if we did this?” The critical word there, I think, is “we”, already tells you that the kinds of collaborations that we need to develop are actually happening on their own.”
About The Creation of the DIPG/DMG Community
The Cure Starts Now has really been the mechanism by which to bring the world together.
“Again, it’s a rare disease, people are spread all over. They’re kind of in isolated islands, I think, trying to work on this problem. What The Cure Starts Now has really has achieved is this more unified, collaborative structure that allows people to work together, to learn from each other, to kind of build on top of what each of them is doing. We all have the same goal and until we get the entire community together we’re not going to solve this problem. The Cure Starts Now is really the mechanism by which we’re able to do that.”
About How Families Are Critical for the Research Process
“Having families [involved] is critical. Not just because they are fundraisers, but because they bring a unique perspective. They have lived the experience, they know the difficulties, they have seen the issues of availability of trials and how to learn from material. Each one of these families stood up to kind of try to change for others what, unfortunately, was not available for them. Having that kind of input is absolutely critical. It’s critical for everybody to watch, particularly some of the junior or the younger investigators that are impacted by the stories. The kind of emotion that comes out of this turns this somewhat from, I think, just a job into a little bit more of this concept of a profession, of a goal. That family connection is an absolutely critical part of making it real, of keeping the focus on what it should be that these aren’t just experiments. There are kids on the other ends of these that need your help and the families, and this provides that connection.”