The Life Raft Group at its core is a love story—a love shared between a husband and wife, a mother and daughter, a brother, a sister, parents, grandparents and friends. We began this journey together, in the same raft, with our shared goal in our hearts: survival. We started the Life Raft Group with a simple mission many years ago, to ensure that no one had to face GIST alone. And I believe that amongst our ups and downs, our triumphs and tribulations, we have succeeded on this front. We are there, all of us, for each other.
I want to thank the LRG community for supporting me through the course of my own love story. My wife Anita and I shared 55 amazing years together. Many of you stood by our side—if not in person, in spirit—for the past 16 years of that shared life. This has been a hard year for me personally, and I thank each and every member of this community for continuing to stand by my side now.
Many of you know that my own personal mission is to make sure that no man should ever have to ask his wife for a last dance. I am committed to this goal. My staff is committed and we have worked tirelessly throughout 2016 to one day make this a reality.
We have seen so many remarkable findings come out of cancer research in the last few years and continue to be encouraged by the breakthroughs happening. While the Life Raft Group maintains efforts to finding a cure for GIST, we also know that some patients do not have the time to wait for cures. Thus, we have devoted ourselves to drastically increasing patient survival.
In the past year, we have dramatically increased our efforts to support, educate and empower GIST patients, helping them gain the necessary knowledge and tools to support their own GIST care.
We held our eighth Life Fest in California in July, revitalizing our program with new panels and workshops focused on unique patient needs. By helping new patients start their journey with a GIST 101 workshop, holding targeted education presentations on mutational testing, understanding your cancer metabolism and cutting edge treatment, and a new, separate wildtype GIST track, we created a richer learning environment for our attendees.
Additionally, we added new locations and increased the number of “GIST Days of Learning” throughout the United States. In collaboration with Alianza GIST, we held a two-day meeting called Salud Con Datos (Health with Data), to discuss how the LRG and our Latin American partners can work together on the collection of data to learn more about GIST and advance our advocacy efforts.
On the science front, we have identified obstacles to patient survival and used our expertise in patient-powered science by developing a number of scientific platforms that provide real-world insights and smart, actionable data to optimize treatment and enhance quality of life.
This summer, we introduced SideEQ (www.MySideEQ.org), a side effects management platform to help people living with GIST and other cancers track and manage their side effects and improve their daily lives.
We are also proud to announce that we have expanded our GIST Patient Registry and created an interactive front end, now called GIST/PRIME. By giving our membership a tool to monitor their GIST history and contribute their data, they can then work with their medical team to improve their medical care. (See our GIST/PRIME article), GIST/PRIME will launch in 2017.
We have also worked hard throughout the year on our clinical research tool – InterGR – which is built off our sophisticated Registry platform and fosters accelerated research through collaboration. By combining research efforts, we can hasten the time it takes to go from a question in the mind of a researcher to an effective therapy in the hands of a patient.
As its first project, the LRG has formed a collaboration with Columbia University and six other top GIST centers to utilize existing technology to identify possible treatments based on genes called “master regulators”. This is the true definition of precision medicine and will help clinicians treat the individual and not just the disease. The Life Raft Group’s registry functions as the monitoring arm of the investigation, tracking the trajectory of the disease and allows us to provide support to patients enrolled in the study.
We are incredibly excited by our progress thus far and invigorated by our new projects going forward. With your help, we can accelerate our progress towards doubling patient survival.