National Brain Tumor Society
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Letter from the Executive Director

Image: N. Paul TonThat Dear ,

How quickly has time passed! The National Brain Tumor Society had its second anniversary this summer, and we are more than halfway through the implementation of the first phase of our strategic business plan. It seems like just yesterday the Boards of the Brain Tumor Society and the National Brain Tumor Foundation agreed to merge to create the National Brain Tumor Society.

Reflecting on all that has happened in the last two years and preparing for this letter, I would like to thank the supporters and the Board for their patience, insight, and determination to create an organization fiercely committed to improving the lives of those affected by brain tumors. This unity of purpose is reflected in new initiatives in our Research, Patient Services, and Advocacy programs as well as in an ever-strengthening community. Together, we are seeing change.

Mary Catherine Calisto Systems Biology Intiative eNews graphicOur research initiatives are in full bore. The $5 million Mary Catherine Calisto Systems Biology Initiative is the largest singular research initiative NBTS or its legacy organizations have ever undertaken. This is a fundamental shift in the research we have funded. We believe that systems biology studies that look at brain tumors in more integrated ways and bring together researchers from a variety of disciplines will more quickly produce plans that will ultimately be testable in clinical trials.

We are driving exciting ideas in pediatric brain tumors as well. In November, some of the top research minds will be developing the framework around the Developmental Neurobiology Initiative. The resulting grant will open in June 2011, focusing on research that seeks to discover and develop effective therapies for pediatric brain tumors that do not adversely affect continuing normal development.

Complementing these initiatives, we have also funded research by the biotechnology company, Tocagen. In their study, a gene is delivered to tumor cells but not normal cells. When a harmless prodrug is administered, only tumor cells convert it into a toxin and are killed because of the presence of the introduced gene in those tumor cells. This approach is unlike other therapeutic approaches that are based on inhibiting specific target molecules within tumor cells.

NBTS continues to look at how to respond to the needs of the people affected by brain tumors. As I reported in my last letter, we have launched My.BrainTumorCommunity.org. This online community provides access to support and information 24 hours a day, seven days a week. We provide a daily blog from the NBTS Patient Services department, profiling survivors, offering an “Ask the Expert” column, and providing information and resources related to patient and family issues.

Living with a Brain Tumor Conference March 2010This fall, NBTS will be bringing Living with a Brain Tumor: A Conference for Patients and Families to Dallas-Fort Worth, Texas. The conference includes speakers from all major treatment centers in the area and the program will feature a survivor art gallery, presentations on new horizons in research, survivorship issues, and support groups, along with exhibitors from the local community.

NBTS is also launching a critical new Quality of Life initiative this fall. We are convening a workshop of experts and advisors from around the world to engage in a robust discussion about how to improve quality of life for all brain tumor patients. The results of this workshop will be published and will help reshape our programs to make the most significant impact on our community.

In the next few months, our advocacy and public policy program will continue to advance. Focusing on creating legislative, regulatory, and policy change, this program takes both what we know and believe about brain tumor research and the needs of people affected by brain tumors and puts it to work in the public policy arena.

We will promote research funding in areas of critical scientific opportunity and actively ensure that the interests of those affected by brain tumors are represented and promoted in legislative and regulatory decision-making. With the passage of healthcare reform and the critical need for new, effective therapies for treatment of brain tumors, we look forward to presenting a strong voice in Washington for the brain tumor community.

We are excited about these new ventures in our core programs as well as our increased awareness efforts through recently added subsidiary, the Kelly Heinz-Grundner Brain Tumor Foundation (KHG). Our efforts in all these areas have incredible potential to enact real change and improve the lives of those in the brain tumor community. We thank you for your input and support as it has allowed us to reach this point in serving the needs of the community. We look forward to what we can accomplish together as we move ahead and affect change.

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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