Joke: What do you get when you put seventy of the world’s top physicians in one room, and forty childhood cancer parents and foundations in another? Answer: Progress.
On May 3rd and 4th, in Cincinnati, Ohio, the second DIPG Collaborative Symposium (www.dipg.org) occurred with amazing results and direction. By the end of the day on Saturday May 4th, well over one million dollars was collectively raised and pledged by close to twenty different foundations and families to support the collaborative research that is mandated by this international group.
To understand what happened that weekend, it is necessary to take a step back in history. DIPG is an inoperable brain tumor with an almost terminal prognosis. On April 10, 2008 my family first learned about these four horrible letters. For thirty-three months, my amazing daughter, Alexis Agin, fought a heroic and dignified battle against this disease. DIPG took my daughter from us in the physical sense on January 14, 2011. Since the time that we found ourselves in the DIPG community and the childhood cancer community as a whole, we watched as the prognosis for children diagnosed with DIPG remained stagnant. I will never forget having a conversation with one of Alexis’ doctors while at NIH (National Institutes of Health). She is a world recognized leader in the fight against DIPG and one of the most compassionate and caring physicians in the entire field of pediatric neuro-oncology. This was rather late into Alexis’ journey. We were discussing some of the research that was taking place and what it meant for the future. She stopped me, and with an air of slight satisfaction she said, “no longer is DIPG a career killer for researchers.” I took a step back. That simple statement spoke volumes. In the past, researchers, institutions and those who grant funding for the research felt that if you focused specifically on DIPG research it was the end of your career due to the almost terminal prognosis and complete lack of progress. This changed during the course of Alexis’ battle.
Fast forward a little bit to the spring of 2011 back in Cincinnati, Ohio. The idea was hatched to hold a very unique symposium at that time. In one room would be some of the most distinguished physicians and researchers from the United States, Canada and all across the world. In another room would sit members of foundations and families who have been touched by DIPG and childhood cancer. The goal, to come up with a roadmap for collaborative research and create a funding pool to match. We did not know how many people would attend. After all, Cincinnati, Ohio is not necessarily the most glamorous of destinations. In the end, it was standing room only. This was a chance for a new dawn in DIPG research. After the second and last day of the symposium, the parents and foundations walked into the room with all the researchers and announced that we had raised approximately $220,000.00 for the research that would come from the meeting. As a result, several novel collaborative grants were funded, including the groundbreaking DIPG Registry. (www.dipgregistry.org). This registry allows physicians and patients all across the world to connect and be on the cutting edge of all the research, trials and data.
Fast forward two more years to this past May 2013. DIPG is no longer a research black hole. It is a disease that holds the key to understanding childhood and adult brain tumors. As the most deadly of all pediatric brain tumors, if we are able to find a way to effectively treat, and more importantly, cure DIPG, the possibilities are limitless. Consequently, this year’s symposium was equally well attended and the excitement within the room of researchers and foundations was palpable. Well over a million dollars will be gathered to support the research and direction of the symposium and collaborative. The research funded will not be single silo, but rather, it will all be collaborative in nature with shared results and data. Institutions that continue to carry out single silo research and fail to share data, tissue and results will hopefully become a thing of the past. Not only is it not prudent, but in the end, such research and practice is counterproductive in many respects. In the end, it is my hope that the DIPG community not only is provided with a cure, but also, that what we have accomplished and will continue to accomplish through this endeavor can create an easily replicated model to follow. Collaborative research not only makes sense, but it also can help to stretch dollars that much further.
In the coming weeks and months, the goal is to populate this section with pieces written by physicians and members of foundations who have participated in this exercise. It will be an effort to create a virtual repository of information on the DIPG Collaborative to allow further growth of the ideas and mission.