Being involved with a no frills all volunteer organization has enabled me to see first hand the power of the patient. I have relied on the savvy patients in our support group for insight and direction across the board and they have come through in unimaginable ways. I’d like to highlight one example of what can happen when patients are put at the forefront of the fight against cancer.
Ryan Humphrey, survivor-fighter extraordinaire of metastatic angiosarcoma became involved with our support group a few years ago. Ryan is incredibly smart and motivated to make a difference, and he has…and he is. Trained as a pilot, but grounded by this disease, Ryan has turned his focus on everything from fundraising, to patient advocacy to outreach. He has excelled in every one of these endeavors. On the fundraising front, he has brought in tens of thousands of dollars that has gone directly into angiosarcoma research. On the patient advocacy front, he has inspired patients with his own fight and provided them with detailed information to assistant them at every stage of this “process”. On the outreach front, he conceived of and executed an initiative to explore the interest of angiosarcoma research within the sarcoma community. As a result of this outreach, we funded a research project at Moffitt squarely focused on angiosarcoma. I would have never known that this group had the resources and drive to conduct a top-notch project without Ryan’s involvement. I now get updates from other patients that are treated at Moffitt as to how the project is unfolding. The doctors get a thrill when patients ask them about the research, the patients are empowered with knowledge..it’s a win win across the board.
In the upcoming weeks, I will gather information from the scientists and oncologists that we are funding as a patient driven organization and will distribute this to the patients who inspired and funded the research. My hope is that the patients will print out the material and bring it to their doctors, surgeons, nurses, Pas and anyone else involved in their care so that we can continue to bridge the gulf between patients, doctors and scientists. Let’s get it done!!