In December, the Life Raft Group launched its “We Are the Cure” campaign to fund GIST research. I sat down with Norman to find out more about The LRG GIST research team and the campaign’s progress to date.
Marisa: The Life Raft Group has been funding GIST research for the last seven years. Tell me a little about how this came to be.
Norman: We knew early on that if we, the GIST patient community wanted to save the lives of our loved ones that we’d have to become directly involved in research. So we put together a team of the world’s foremost GIST researchers and asked them to collaborate and cooperate. These scientists have been able to challenge the traditional cancer research norms and they’ve set new standards for how research can and should be done. We—as a patient community—got a seat at the table so that we could be part of the process and help maintain a sense of urgency that we as patients and caregivers live with every day.
Marisa: What has come out of the collaboration?
Norman: We’ve seen something remarkable take place with this team. Not only have scientists at different institutions been willing to share rare tissue but as importantly, they are sharing data. What this means is that their fellow researchers can know what works and what doesn’t work way in advance of published data. So instead of waiting a year to read about an experiment in a journal, these researchers consult with each other, thereby speeding up the research process. The Life Raft Group has aided in this by establishing a tissue bank and a registry of associated data which links patients’ clinical histories to that tissue. This has become an important resource to the scientific team and it’s another example of how GIST patients are having an impact on research.
Marisa: In this new “We Are the Cure” campaign you mention that GIST research is in danger? Has something changed?
Norman: Unfortunately the pool of money for research has been shrinking. As a rare disease we are affected more than other more common cancers like breast and colon. Institutions like the National Cancer Institute are funding just four to five percent of all research proposals which means that a rare cancer like GIST is lost amongst the roughly 200 cancers competing for funding. The fact that the Life Raft Group is the single largest supporter of GIST research in the world tells you a lot about how important the GIST community is to the state of GIST research and what would happen if we cannot sustain our current level of funding.
Marisa: What kind of projects does the funding support?
Norman: So many. I’ll just give you a few examples. Dr. Matt van de Rijn’s lab at Stanford is using immunotherapy to fight GIST cells using antibodies to trick cloaked tumor cells into revealing themselves. Dr. Anette Duensing’s lab in Pittsburgh is doing amazing work to overcome the DREAM complex, which helps GIST cells fall asleep, thus evading death from drug treatment. By combining Gleevec with another drug, they hope to essentially wake the cells up for Gleevec to find and kill. Dr. Brian Rubin’s lab at the Cleveland Clinic not only has created new, stronger mouse models to support many research labs, but is currently working on intense combination therapy of up to three drugs that if effective, could delay resistance for many years. And these are just a few highlights from this highly collaborative and forward-thinking team.
Marisa: How much do you hope to raise through your “We are the Cure” campaign and how is it going so far?
Norman: The LRG is committed to raising several million over the next two years to keep the research going at the same, if not higher, level. So far we’ve raised over $150,000 and we have several fundraising events planned for this year with all funds going towards research.
Marisa: How can people help and do you have any final thoughts to share?
Norman: Anyone can make a contribution through our website, send a check or ask their families and friends to join with us to find this cure. The GIST community may be small but we are determined. We have the tools in place to find a way to put an end to this disease. We can’t stop now.