Since our inception 10 years ago as an online community of cancer patients focused on one form of cancer – GIST – the Life Raft Group has taken a three-pronged approach to curing the disease: patient education and support; cancer advocacy and funding; and managing global research initiatives. Now comprised of more than 150 employees and volunteers, in chapters spanning over 50 countries, the goals of the Life Raft Group continue to increase our standards of excellence.
Our membership continues to grow everyday! Harnessing social media outlets such as Facebook, Twitter and YouTube we will continue to build a global community of cancer patients and caregivers extending a hand to those who need support and ensuring on a global level that no one faces GIST alone.
As part of its three-pronged approach to curing GIST, the Life Raft Group initiated a strategic research plan – Pathway to a Cure -that emphasized cooperation, coordination and accountability. Its focus was on identifying projects with the greatest chance of successful outcomes. One unique project within Pathway to a Cure is “Project D-Day”, which was initiated in July 2010. A two-year initiative, it is focused on four areas:
- Sequencing the GIST genome
- Gene knockdown studies or screens that will examine pathways essential for GIST cell survival
- Drug screening of GIST cells against large libraries of drug compounds, including drugs in late stage development and approved drugs; and
- Validation studies where discoveries in previous research will be repeated for confirmation
The Research team met in February 2011 and reported on progress to date. The whole report can be found here, but highlights include:
- Important gene identified from finished pooled shRNA-screen as critical for KIT stability and GIST cell survival
- Screening and identification of 7 of 27 compounds sensitive or resistant to imatinib that could potentially inhibit GIST growth
- The potential of several non-GIST drugs to have activity in highly imatinib-resistant GIST cell lines; and
- The discovery that a well-known tumor suppressor may have activity in GIST
- Why is our research so important?
While scientific knowledge and research are critical components of our goal, so to is a voice to the public ear as it enables us to broaden our efforts defeating GIST. In this light, I’m happy to share with you recognition we have received that underscores the importance of how we approach curing the disease. The 3rd Meeting in the 2010-2011 President’s Cancer Panel* series, The Future of Cancer Research: Accelerating Scientific Innovation was held in December 2010. The Panel heard expert testimony from innovators who are engineering and evaluating new technologies, models of research, collaborations, funding strategies, and ways of communicating ideas.
In the December 2010 PCP meeting, information was presented from a Pew Research Center study documenting the role of the Internet in Americans’ lives – including people living with chronic disease. The Life Raft Group was highlighted in the study as an example of the kind of participatory medicine that the Internet can foster. The President’s Cancer Panel included elements of this in its report issued March 18, 2011, urging the scientific community to recognize the Life Raft Group as an example of participatory medicine by engaging members of the public and educating them about the benefits of participating in clinical research. This recognition underscores the true value of what our efforts focus on – leveraging the broader community to find a cure for GIST. The report is included can be found here.
We are thrilled about the progress we are making in research and how our approach is being heralded by leaders in the oncology community as a marker in approaching a cure to this cancer. Every member of the global GIST and Life Raft Group communities is a part of that effort. The key to finding a cure is through knowledge and sharing of ideas, and your ongoing commitment and support to that and the Life Raft Group is critical.
Norman J. Scherzer
The Life Raft Group
*The President’s Cancer Panel (PCP, the Panel) was established in 1971 with the passage of the National Cancer Act. Comprised of three persons, the Panel holds at least four meetings, open to the public, to solicit input from a variety of stakeholders, and submits an annual report to the President of the United States with recommendations focused on improving the National Cancer Program.