In the span of a few weeks, representatives from the LRG traveled all over the country to attend events and gatherings relevant to the GIST community, from LRG research to the research community at large and patient gatherings on opposite ends of the country. In this article, LRG Director of Planning & Development, Marisa Bolognese, details these meetings.
GIST Research Team Meeting
Oregon Health & Science University in beautiful Portland,Oregon was the location for LRG’s Research Team meeting on October 27 and 28. This was the first meeting of the expanded tenperson expert team of GIST experts which includes: Drs. Cristina Antonescu and Peter Besmer of Memorial Sloan-Kettering Cancer Center; Sebastian Bauer of the West German Cancer Center, University of Essen, Germany; Chris Corless and Michael Heinrich of Portland VA Medical Center & Oregon Health & Science University; Anette Duensing of the University of Pittsburgh Cancer Institute; Jonathan Fletcher of Brigham & Women’s Hospital; Maria Debiec-Rychter of the Catholic University of Leuven in Belgium; Matt van de Rijn of Stanford University Medical Center and Brian Rubin of The Cleveland Clinic. Also attending the Research Team meeting were LRG Executive Director, Norman Scherzer, LRG Science Coordinator, Jerry Call, and LRG Planning & Development Director, Marisa Bolognese.
The LRG marked the occasion by presenting the team a two million dollar check, which represents the next two years of funds, the LRG has committed so far to its “Pathway to a Cure” research program. Combining the twoyear grants awarded in 2006 with the new two-year grants, the LRG has now raised and awarded four million dollars to find a cure for GIST. At the awards ceremony, Drs. Chris Corless and Michael Heinrich also presented a plaque to Norman Scherzer in appreciation of the LRG’s ongoing support of their research.
The team gathered to share the latest findings from each of their labs and to discuss the progress of current Research Team projects. This in-person meeting provided a great opportunity for the team to brainstorm and to identify new areas of collaboration and exploration.
The team left Portland with renewed commitment to priority areas from the first grant period, including understanding mechanisms of resistance and stable disease, investigating wildtype and Pediatric GIST and some new areas of emphasis such as apoptosis (cell death) and translational studies where lab discoveries can become treatments. Another exciting development is a plan to support lab-based research conducted by the LRG Research Team with data from the LRG’s patient registry in order to accelerate scientific discoveries about GIST. This project is in development and will be pilot tested early next year.
Bio Investor Forum, San Francisco, California
The LRG attended the Seventh Annual Bio Investor Forum on October 29 to 31 in San Francisco. The event featured over 500 Bio Tech companies and 200 investors as well as a small but growing contingent of research-focused nonprofit organizations. LRG was joined by the Muscular Dystrophy Association, The Leukemia & Lymphoma Society, Juvenile Diabetes Research Foundation, The Epilepsy Project, The Prostate Cancer Foundation, The Myelin Repair Foundation and FasterCures in making presentations about their research efforts to investors and biotech companies. The event offered LRG an opportunity to talk to innovative biotech companies that may have drugs in development that could have potential application for GIST. Norman Scherzer was taped for a podcast at Bio Investor Forum that you can access at https://liferaftgroup.org/.
LA Local GIST meeting
On November 11, Norman and I met with LRG members and their families in Santa Monica, California. Over lunch, people shared their stories and got an opportunity to learn about the latest scientific advancements
from the LRG Research Team. Above all, it was a time to get to meet other people who are conquering GIST and make local connections with those who share the same journey. It was especially nice to meet spouses, moms, and kids and see how well everyone is doing. For us, it felt like coming home and being with family. Thanks to everyone who traveled to join us and for helping to make the gathering such a success.
On November 12, in Los Angeles, Calif., the LRG attended a meeting sponsored by FasterCures, the action tank working to help accelerate the process of finding cures. FasterCures convenes meetings which bring together non-profits groups who are research innovators in their search for cures. These groups represent a wide range of diseases, such as ALS, heart disease, cancer, diabetes, autism and epilepsy. The LRG’s participation has made a wider range of resources and information sharing possible. The November 12 meeting topic was “From Social Entrepreneurship to Cure Entrepreneurship.” More than 30 senior leaders from organizations that fund medical research
and from the broader sphere of social entrepreneurship met for a day of brainstorming and discussion. One key topic was how to apply lessons learned by social entrepreneurs to those pursuing what FasterCures calls “cure entrepreneurship,” or novel approaches to accelerating the process of treating and curing disease. As noted in Faster- Cures blog: “Much of the discussion during the day centered on the need for better information flows about what work is being done, by whom, and its quality; the need for better communication about why new approaches are needed and the promise they hold; and the need for nonprofits to find creative ways to leverage their relatively small funds into larger investments into new therapies. There was also a common focus on the centrality of patients and the transformative nature of empowering them to play a greater role in research.
“The social entrepreneurs and cure entrepreneurs in the room found a lot of common ground. In part because both distinct sectors function in a similar space where success is often the result of effectively leveraging the assets that it creates. It was noted however that the social business model is difficult to achieve in medical research because of its cost implications. Throughout the day, participants alluded to the need for unconventional solutions, unusual channels to reach nontraditional audiences, outcomes-focused collaborative efforts, and ideas that could be acted on in realtime by the right people”.
New England GIST Meeting
On November 22, in Providence, Rhode Island, the newest local GIST support group was born. Susan Farmer hosted the group in her home which proved to be a day filled with laughter, good cheer and great food (especially the desserts). The opportunity to share personal GIST journeys, information and news was a winning combination. The group was energized by each other’s high spirits and positive attitudes.
The first meeting was a huge success and clearly just the beginning of what will prove to be a thriving community of friendship and support. The Life Raft Group sends a great big thank you to Susan and her family for their generous hospitality. Thanks to all those who came together on a cold but sunny November day and who left feeling uplifted by each other’s support and open arms of friendship.