9/1/2009
A review of accomplishments a year after our merger.
A review of accomplishments a year after our merger.
- Mourning the loss of Senator Kennedy
- Patient Services program to expand content and use of technology
- Maximizing research funding contributions
- New Pediatric Research Initiative drives more systematic, efficient investigations
- Advocacy efforts
National Brain Tumor Society is already one year old. When the boards of Brain Tumor Society and National Brain Tumor Foundation joined forces to become NBTS, the goal was set to create an organization that serves patients, survivors, and families with a more robust and comprehensive patient services program and makes significant and meaningful impact in research towards finding a cure. This year a lot has been accomplished and the groundwork is being laid for the years to come.
Before I go on, I would like to pause and acknowledge the recent news of the passing of Senator Edward (Ted) Kennedy, a long time champion for health care reform and cancer research funding. Senator Kennedy spent his decades on Capitol Hill advocating for improved health care and comprehensive cancer research. Today because of his courageous battle with the disease, the world is more aware of the devastating problems that brain tumors present. This awareness plays a critical role in getting more funding to further important research and supporting members of the brain tumor community. We at NBTS are thankful for Senator Kennedy’s tireless efforts and offer our deepest condolences to his family, friends, supporters, and staff. His presence will be missed but his message of hope will carry on.
In continuing to support the diverse needs of our community, our Patient Services program continues to provide relevant resources at www.braintumor.org and responds to over 1,000 calls and emails each month, interacting with patients, survivors, caregivers, and members of our community from around the country. In striving to be the best resource for the brain tumor community, we will improve content as well as access, user involvement, and participation as we further expand our Patient Services program. In the coming months, we will make greater use of technology and interactive tools to deliver the most complete and comprehensive informational base on brain tumors, thus supporting the community and helping those who have this disease make the best decisions for themselves. We are also working to increase the access and availability of our Caregiver Training program to better support those who care for brain tumor patients.
In our ongoing commitment to make the most impact with your research investment in NBTS, we support research that meets the dual criteria of clear potential to lead to clinical trials and shows full promise of moving that area of research forward in new ways, ultimately leading to a cure. To this end, we have revised our grant structure. We have kept our standard research grant, which answers critical basic and translational scientific questions. Building on this foundation, the advanced research grant is intended to focus on translational research with significant potential to accelerate the discovery of therapies. Finally, the innovation research grant is designed to fund highly transformative research projects. These can be within academic or industry research areas.
We have also introduced a Pediatric Research Initiative, focusing on developmental neurobiology and comprehensive molecular profiling. This initiative will help the field have a more complete picture of biological targets so that future investigations into specific pediatric tumor types are more systematic, efficient, and effectively yield viable treatments. Within the pediatric research field this is a paradigm shift and NBTS is committed to leadership in this shift, both through our own funding initiative, and through our peer-to-peer advocacy within the scientific community and among other brain tumor research funders.
In order to ensure research and patient issues continue to get attention from government, we continue to fight for change through advocacy efforts on behalf of the brain tumor community. Currently NBTS is faced with both the opportunity and the challenge of fighting for the needs of the brain tumor community as our government considers options for health care reform. The recent stimulus bill infused significant short-term funding for research, but it appears that rare cancers like brain tumors may be overshadowed by the unprecedented number of research grant applications. Our charge is to work closely with the North American Brain Tumor Coalition (NABTC) to ensure long-term funding for brain tumor research and affect changes to health care policies of significance to patients and survivors. As a patient advocacy organization, NBTS also reaches out directly to National Cancer Institute (NCI), championing priorities that support publicly funded brain tumor research, in addition to our own direct grant awards.
So as we look forward to the next year, building on our three-pronged structure of patient services, research and advocacy, and evolving our programs to meet the needs of the community, we welcome your input and thank you for your support. Together, we will improve the quality of life for those affected by brain tumors and find a cure.
Sincerely,
N. Paul TonThat
Executive Director
P.S. If you haven't yet heard, an anonymous donor has put forth an exciting challenge. Your gift today will be matched dollar for dollar to support GBM and pediatric research. With the economy affecting both research and industry programs, now is the time to make a difference. The deadline for this challenge is the NBTS Annual Meeting on September 24. Double your investment. Double the research. Please give at www.braintumor.org/DoubleResearch today.
