“I can honestly tell you that were it not for the DTRF advocacy, I don’t think this [sorafenib] paper would have really gone on to the next steps. And it’s really with their funding, to fund some of the correlated work, and a lot of the pushing and the urging, and really saying look ‘we really need something for our patients’ that lead us to two years of planning – lead to a Phase III study. And this was an international study in US and Canada with hundreds of sites that were open…And one of the first things that the people who thought it was impossible to do research in rare cancers such as desmoid tumor research said is ’It’s too rare, you’re not going to the find patients. You’re not going to be able to enroll all patients in time.’ And the DTRF really came through. And they said ‘No, we will inform our patients about this study.’ And people became aware of it by word of mouth, through internet, through the DTRF website. And we set an incredible record in accruing patients to this huge, phase III clinical trial. People thought it was going to take 5 years to do it. The study was completed in just about 17 months or so. It was really the power of patient advocacy that helped even envision and complete this Phase III clinical trial. And we of course published this in a nice journal and now we’re thinking about how to take it to the next steps.”