Tamara Darsow, PhD

The role of non-profit and private organizations in disease-specific research and innovation

Abstract
The vast majority of funding for basic biomedical research in the United States and other countries is derived from governmental agencies. The determination of how those funds are prioritized and allocated varies, but is subject to budgetary and political pressures. Therefore, funding allotted for support of research in any particular disease state differs dramatically, and is not always directly proportional to the prevalence or impact of the disease. Particularly for diseases that impact a small number of people or that have an impact that is not well-understood, the available funding for research may be limited, which prevents progress toward prevention, treatment and cures of these diseases.

Private foundations and non-profit organizations serve an important role in support of disease-specific research, and can impact research policies and scientific progress at many different levels. These organizations often serve as a coordinated voice for the people affected by the disease and play a critical part in coalescing support for research - at the individual, community and governmental levels. Many organizations also directly support research through independent grant programs that fill important unmet needs in research funding and bridge translational and regulatory gaps. The American Diabetes Association performs many of these functions as part of its mission; advocating for federal funding for diabetes research from the US government, directly supporting innovative, high-risk and early stage research projects, building the early investigator pipeline required for future research progress, accelerating the translation of clinical and fundamental research discoveries to the next level application, and working within the regulatory environment to accelerate approval of medicines critical for people with diabetes. Specific examples of these activities and their impact will be discussed.

Biomedical researchers can benefit tremendously from a clear understanding the role of non-profits and foundations within their area of research, and by becoming involved as volunteers and members. Not only can involvement lead to potential funding and career development opportunities, working within these organizations allows researchers and clinicians to inform the activities of the organization and be part of the process of setting priorities, identifying unmet needs, and influencing the agenda for research in their areas of interest.

Vita
Tamara Darsow, PhD currently serves as Vice President - Research Programs for the American Diabetes Association. Dr. Darsow joined the Association in 2011 and is responsible for oversight of the Association's research grant programs, grant review and research policy committees, outcomes research activities, and scientific and medical outreach for the American Diabetes Association and its Research Foundation.

Prior to joining the American Diabetes Association, Dr. Darsow served as Director of External Research and Strategic Relations at Amylin Pharmaceuticals, Inc., in San Diego, CA. In this capacity, she was responsible for the organization's external research programs which included investigator-initiated trials, collaborative research projects, and named patient/compassionate use programs. In addition, Mara was involved in developing and defining overall external research strategy; managing research grant operations and scientific review committees; identifying and securing new collaborative research opportunities with academic institutions and nonprofit organizations; and providing scientific communication to investigators, physicians, institutions and advocacy groups.

Dr. Darsow earned her Bachelor of Science in Microbiology at Montana State University and her PhD in Cell and Molecular Biology at the University of California, San Diego. She was a Damon Runyon postdoctoral fellow at the Salk Institute for Biological Sciences in Cellular and Molecular Neuroscience. She has published numerous scientific and original manuscripts, chapters and review articles - many focused on type 1 and type 2 diabetes.