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Letter from the Executive Director

Image: N. Paul TonThatDear Friend,

I want to update you about some of the ways the National Brain Tumor Society (NBTS) continues to implement its mission. The fall began with our staff and board members coming together to look at and discuss realigned programs as part of our strategic business planning process. The board had adopted the recommendations of the plan in the previous spring, and staff spent last summer designing programs to better meet the needs of the brain tumor community. Each program area was not only reviewed, but, if necessary, rethought, and now new program implementation is underway.

The overarching themes of the plan are accessibility, relevancy, impact, and community.

  • NBTS' programs and information must be easily accessible 24/7.
  • Our programs must be relevant not only in content, but in their delivery methods.
  • Our programs must have measurable impact.
  • Most importantly, we understand we can do nothing without the active participation and generosity of the brain tumor community.

Delivering New Content

Our Patient Services strategy will increase the amount of information available online, through our free patient information phone lines as well as in community-based programming.

Visit My.BrainTumorCommunity.OrgWe have just launched My.BrainTumorCommunity.Org, the most robust online community focused entirely on brain tumors. We hope that this platform will facilitate connection with and among members of the brain tumor community. Please do stop by and log on. Content on My.BrainTumorCommunity.Org comes from NBTS and members of the brain tumor community.

We have also launched a clinical trial matching service on our website, working in collaboration with EmergingMed. This service will expedite the process of finding available clinical trials given specific diagnosis and treatment regimes.

We have taken our caregiver program and redeveloped it in a webinar format as well as for community-based training through local partners.

In the coming months, we will also expand our online training and information programs and change the model of our Patient Services conferences in order to collaborate better with multiple healthcare institutions and deliver diverse and relevant points of views on the best courses of treatment and support. Two patient and family conferences entitled, "Living with a Brain Tumor," are planned this year: Washington, DC on March 19-20 and Dallas/Ft. Worth, TX in September.

Photo: Patient Services Conference - San Francisco, CA 2009We will be convening a quality-of-life workshop with various thought leaders in late spring 2010 to develop a clearer understanding of the changes affecting adult and pediatric brain tumor patients, survivors, and their families. NBTS is committed to enhancing programming and advocacy to address this critical issue as more people are living with brain tumors.

In the next 12 to 18 months, our Patient Services program will roll out more comprehensive content on our website, build up pediatric brain tumor support and programming, work to expand peer support networks and local partnerships, and deliver programs and services to support the brain tumor community through all stages of the journey.

Funding Transformative Progress

In Research, our strategy is divided into three areas, identified by the timeframe of their impact to reach new therapies. The first area of funding will focus on research with strong, long-term potential; efforts that will likely take more than three years before reaching clinical trials. The second area of funding will focus on research technologies that enable and facilitate potential therapeutics for brain tumors; these mid-term projects should have an impact on clinical trials within two to four years. The third impact area is to fund exciting research projects that are both mature and positioned to reach clinical trials in one to two years. We expect these projects to have impact in the short term and accelerate the momentum of brain tumor research.

We have identified 'systems biology' and developmental neurobiology initiatives to meet the long-term impact objective.

Photo: David Hurwitz, Chief Scientific OfficerWe will release a Request for Application in March 2010 that will embrace a 'systems biology' approach to brain tumor research. Systems biology is an interdisciplinary field of study that focuses on complex interactions in highly intricate biological systems like brain tumors. We have seen brain tumors evading the affects of experimental therapeutics again and again because the tumors take advantage of the redundancies and complexities of the biological system. We believe a 'systems biology' approach is key to addressing this complexity and inter-relatedness.

It is well established that pediatric brain tumors result from aberrant developmental neurobiological processes. Current standard treatments and experimental therapeutics often have negative consequences. NBTS will hold a workshop in late spring of 2010 to explore the study of developmental neurobiology and its implications to a new class of therapeutics for pediatric brain tumors that effectively treats brain tumors without negatively affecting normal development. In the summer of 2010, we will release a Request for Application for research focused on developmental neurobiology.

We are reviewing several mature and well-positioned projects for our short-term impact grant-making. We will announce them as soon as we complete the review and finish our due diligence. These are extremely exciting because their impact on the brain tumor community could be very soon should the clinical trials prove successful.

We are committed to maximizing the return on investment of every dollar spent on research. Our Scientific Advisory Council (SAC) maintains the highest standards in grant review. Led by Oliver Bögler, PhD of M.D. Anderson Cancer Center and Linda Liau, MD, PhD of University of California - Los Angeles, the SAC includes leading researchers from the foremost hospitals and research institutions. Our Chief Scientific Officer, David R. Hurwitz, PhD collaborates with prominent experts across the US in thoughtful analysis and thorough understanding of the many areas of study that make up brain tumor research.

Advocating for Change

Our growing Advocacy program focuses on creating or changing laws and policies that address issues of critical importance to those affected by brain tumors and to engage the brain tumor community to effect those changes. We work with the community to fight for resources and attention that address critical needs for new therapies and improved quality of life.

This program is also in the midst of a transformation. We are committed to developing a strong public policy agenda that will allow NBTS to clearly and forcefully address the extensive issues that so many of you have fought for, for so long. Together we will see change.

Know that we are fiercely committed through all our efforts to improve the lives of those affected by this devastating disease. In leading the charge, we strive to understand and meet the challenges, influence the thinking around brain tumors, and inspire hope by connecting the community in new ways.

I shall continue to inform you of our progress, and look forward to your ongoing engagement.

Sincere regards,

Image: N. Paul TonThat signature

N. Paul TonThat
Executive Director

National Brain Tumor Society is a nonprofit organization inspiring hope and providing leadership within the brain tumor community. We exist to find a cure and improve the quality of life for those affected by brain tumors. We fund strategic research, deliver support services, and promote collaboration.
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