Organizations Filed Purposes:
MISSION STATEMENT THE MISSION OF THE AMERICAN BRAIN TUMOR ASSOCIATION IS TO ADVANCE THE UNDERSTANDING AND TREATMENT OF BRAIN TUMORS WITH THE GOALS OF IMPROVING, EXTENDING AND, ULTIMATELY, SAVING THE LIVES OF THOSE IMPACTED BY A BRAIN TUMOR DIAGNOSIS. WE DO THIS THROUGH INTERACTIONS AND ENGAGEMENT WITH BRAIN TUMOR PATIENTS AND THEIR FAMILIES; COLLABORATIONS WITH ALLIED GROUPS AND ORGANIZATIONS; AND THE FUNDING OF BRAIN TUMOR RESEARCH. IMPACT STATEMENT FOUNDED IN 1973, THE AMERICAN BRAIN TUMOR ASSOCIATION WAS THE FIRST AND IS NOW THE ONLY NATIONAL ADVOCACY ORGANIZATION COMMITTED TO FUNDING BRAIN TUMOR RESEARCH AND PROVIDING INFORMATION AND EDUCATION ON ALL TUMOR TYPES AND ALL AGE GROUPS.
SEE ATTACHMENT 1
PROGRAM SERVICE I: MEDICAL AND SCIENTIFIC RESEARCH GRANTS Research Programs I: MEDICAL AND SCIENTIFIC RESEARCH GRANTS The ABTA's historical support of early-career investigators working to improve brain tumor diagnostics and treatment has contributed to populating the modern brain tumor research and scientific community. Many of the scientists we have supported have gone on to mentor new researchers in the field and have become leaders of some of the nation's most prestigious brain tumor centers. In addition to supporting early-career investigators, the ABTA funds discovery science which encourages the development of new approaches to the diagnosis and treatment of brain tumors. These grants allow researchers to conduct the novel early scientific studies needed to secure additional funding for their projects. Interest in these new concepts has been shown by the NIH and venture capitalists, who have provided additional funding at significantly higher levels than the ABTA's grants. The development of new diagnostic and therapeutic approaches advances the understanding and treatment of brain tumors, and increases the potential for improving, extending and ultimately saving the lives of those living with a brain tumor diagnosis. An independent, multi-level, external review process ensures that ABTA grants are awarded for the most meritorious research projects. Our prestigious Scientific Advisory Council and grant reviewers are leaders in the brain tumor community. Many were themselves recipients of ABTA funding earlier in their careers. The American Brain Tumor Association's Request for Applications (RFA) Driven Funding Program supports career development and innovative research through the following grant mechanisms: - BASIC RESEARCH FELLOWSHIPS $100,000 two-year grants for postdoctoral fellows embarking on careers dedicated to brain tumor research. Through these awards and under the guidance of a mentor, the ABTA is ensuring a diverse pool of highly trained brain tumor scientists will emerge as the next generation of leaders in the field. An ABTA Basic Research Fellowship is a highly regarded, and often the first, grant of a postdoctoral fellow's career. To date, we have helped retain over 250 researchers in this field, via ABTA Basic Research Fellowships. Many transitioned into leaders of brain tumor research laboratories and treatment programs, and now serve as mentors to new scientists entering the field. - Medical Student Summer Fellowships $3,000 summer stipend grants allowing medical students to spend a summer conducting brain tumor research. These grants aim to expand the nation's pool of physician-scientists in the brain tumor research field. These summer fellowships are one of the most exciting areas for the ABTA to fund as they are so meaningful to these enthusiastic students embarking on their careers. This unique opportunity gives the grantees the ability to focus on a research project full-time and determine how they can incorporate brain tumor research into their developing careers. It also provides them with valuable research lab skills that will motivate them to pursue a career in neuro-oncology research. - Discovery Grants One-year, $50,000 grants that fund high risk/high impact projects with the potential to change current diagnostic or treatment paradigms for adults and children with brain tumors. These grants specifically encourage innovative novel research at its earliest stages, in the hopes that it spurs additional funding in the future. Discovery Grants, while considered the most "high risk/high impact" of our funding areas, carry the highest opportunity for reward and innovation. To date, 59 of these grants have been awarded. Funding has been provided for a variety of focus areas including immunotherapy, new biomarkers, nanoparticles and stem cell research. - ABTA RESEARCH COLLABORATION GRANTS The ABTA Research Collaboration Grants are the largest grants we offer. These grants are two-year, $200,000 grants designed to specifically bring together two or more researchers from multiple disciplines and multiple institutions. Researchers are encouraged to move toward team science projects that could generate results that are more scientifically impactfu. Complex problems, such as treating brain tumors, require complex appraoches including the use of innovative, modern technologies. Therefore, the ARC grants were launched as a pilot program in 2016. Research Programs II: Strategic Partnerships The ABTA invests time and resources into strategic partnerships to leverage capacities of different organizations to address critical challenges and cross-cutting issues in research, clinical practice, and public health - ABTA is one of the founding members of the Brain Tumor Funders Collaborative (BTFC), which was established in 2005. The BTFC is a unique alliance of brain tumor research funding organizations that work together to enhance collaboration and strategic coordination of research efforts. The BTFC sees funders, advocates, clinicians, and researchers as one community with shared goals. The BTFC releases periodic calls for applications to fund research projects through this partnership. Currently, the BTFC is supporting a $2 million international research project exploring the commonalities among long-term glioblastoma (GBM) survivors that is ongoing. - ABTA is a member of the Health Research Alliance (HRA), which brings together not-for-profit, non-governmental funders of biomedical research and training to foster open communication and collaboration among members, provide comprehensive data and analysis about the funding of biomedical research and training by HRA member organizations, identify gaps in funding and facilitate innovative grant-making, and address any issues that are key to accelerating research discovery and its translation to the patient. These efforts support the continuum of health research and training from biomedical science to applications that advance health. - ABTA has a partnership with the American Association for Neurological Surgeons (AANS) through two programs that support early career investigators. Both of these programs foster and recognize early career talent in the field of neurosurgery: - American Association of Neurological Surgeons (AANS) Young Investigator Award - Congress of Neurological Surgeons (CNS) Young Investigator Award - ABTA has supported the Society for Neuro-Oncology (SNO) Annual Meeting for many years through conference support and educational programming. SNO has become a dynamic force in neuro-oncology, providing a rich environment for its diverse worldwide membership. - ABTA has developed a new relationship with the American Association for Cancer Research (AACR) which is the oldest and largest scientific organization in the world focused on every aspect of high-quality, innovative cancer research. Its reputation for scientific breadth and excellence attracts the premier researchers in the field. AACR also publishes a number of highly ranked peer-reviewed journals in cancer research. - In 2017, the ABTA supported the attendance of 5 early career investigators at the AACR Annual Meeting. These AACR-ABTA Scholar-in-Training Awards were presented to researchers conducting high-merit brain cancer research who presented their research findings at the conference. The conference was attended by approximately 18,000 participants from around the world. - Since 2008, the ABTA has been the only patient advocacy organization represented on the National Comprehensive Cancer Network (NCCN) Central Nervous System Cancer Panel, which reviews the NCCN CNS guidelines on an annual basis and makes recommendations for updates based on the evolving standard of care. - The ABTA also supports the Response Assessment in Neuro-Oncology (RANO) annual meeting that occurs every year in conjunction with the American Society for Clinical Oncology (ASCO). The RANO meeting provides a forum at which scientists and clinicians are working together to develop appropriate guidelines for measuring patient response to treatment in clinical trials. Research Programs III: Research Engagement ABTA prioritizes continued engagement with the broader brain tumor research community through a number of ways: - ABTA Scientific Advisory Council is a group of top-level scientists and clinicians who advise the organization on its research-related efforts. With the guidance of these experts, ABTA can invest every research dollar as carefully and conscientiously as possible - ABTAs research grants are reviewed through a rigorous peer review process, led by the SAC members who have made significant contributions to advancing the field or who demonstrate promise of leading the field and are committed to furthering ABTAs mission - SAC members serve as Chairpersons who help to lead the review committees discussion of applications during the peer review process - SAC members also contribute in other ways to ABTAs missi
Program Services II: Brain Tumor Information and Education The American Brain Tumor Association is a trusted resource for brain tumor patients, caregivers and health care professionals. Our well-trained team responds daily to requests from patients and families seeking assistance in understanding a diagnosis or treatment, or in navigating the emotional complexities of a brain tumor diagnosis. From a wide range of publications to webinars and educational programs, our goal is to ensure that brain tumor patients, their families and those who care for them have the tools and information they need from the point of diagnosis and throughout the trajectory of the disease. The ABTA provides: - Educational information for pediatric and adult patients at www.abta.org. - Professionally reviewed print publications Specific brain tumor information from diagnosis through treatment are available at no charge to patients and families. Most are available in downloadable format and in Spanish. - Well-trained team delivering one-on-one informational services on ABTAs CareLine by phone or by email, assists patients and caregivers by providing emotional support and providing resources that meet their needs. This year, the ABTA supported nearly 3,000 exchanges though the CareLine. - Connections online support community connects patients, families, caregivers and friends for support and inspiration. There is no charge for membership, and the site is available 24/7. This year the Connections online community grew to nearly 14,825 members. - ABTA TrialConnect assists patients interested in identifying the most appropriate clinical trial and enrollment. - Regularly scheduled webinars are free, hour-long presentation on topics of interest for brain tumor patients, families and health care professionals. Webinars are recorded and can be viewed at any time on the ABTA website and YouTube. To date, the webinar library has been viewed nearly 112,500 times. - An annual national patient-centered conference bringing the nations leading experts together with patients and their families to share brain tumor research, treatment and care trends and information as well as opportunities to interact with ABTA-funded researchers and network with others. - Outreach to and collaboration with health care institutions to promote and enhance brain tumor education and awareness at the local level. - Updates on brain tumor care and treatment through our semiannual newsletter, monthly electronic communications, and regular website postings at www.abta.org. Advocacy Successful advocacy efforts this year included inclusion of brain cancer as an eligible cancer for study in the Department of Defenses Peer-Reviewed Cancer Research Program in the fiscal year 2017 Defense Appropriations Act; collaboration with other cancer groups to successfully advocate for an amendment increasing PRCRP funding by $8 million; and collaboration with other cancer groups and Vice Presidents Cancer Moonshot Task Force. In addition, the ABTA is active in its alliances with such organizations as the National Organization for Rare Disorders (NORD), the Patient Advocacy Foundation's Regulatory Education and Action for Patients (REAP) group, Alliance for Childhood Cancer, and American Brain Coalition.
Program Services III: HEALTHCARE PROFESSIONAL OUTREACH The ABTA brings to the health care professional community the tools to assist them in providing their patients and their patients caregivers with up-to-date information, opportunities to help them better understand the impact of a brain tumor on the lives of patients and their families, and collaborations that will advance new approaches to the diagnosis and treatment of brain tumors. Through relationships with healthcare providers and collaborative efforts between organizations, institutions and researchers, the ABTA adds to the knowledge of the impact of this diagnosis on patients and their families. We do this by: - Assessing the informational needs of health care professionals relative to the ABTAs offerings in the areas of a) educational information being sought, b) their preferred manner of receiving educational information, and c) the ways in which this information is extended to their patients and caregivers. - Actively participating in professional organizations as members, exhibitors or both, such as the Academy of Oncology Nurse & Patient Navigators, the American Association of Neuroscience Nurses, the American Association of Neurological Surgeons, the American Society for Therapeutic Radiology and Oncology, the Association of Pediatric Hematology/Oncology Nurses, the College of American Pathology, and the Oncology Nursing Society. These organizations provide the ABTA with opportunities to enhance our visibility within and share resources with the brain tumor clinical and scientific communities. - Through a collaboration with the American Association of Neuroscience Nurses, the ABTA developed the first brain tumor clinical practice guidelines for both adult and pediatric patients. This year, the ABTA began a collaboration with AgileMD, a web, modible and EHR-integrated application, to push Clinical Practice Guidelines to nurses and social workers serving the brain tumor community. AgileMD has a mobile network of 55,000 users at 300+ health systems. - Since the launch of the online Brain Tumor Support Group Facilitator Training Program that awards nurses and social workers four CEUs upon completion of the course, the ABTA has trained nearly 100 nurses and social workers. - This year, the ABTA established a Clinical Advisory Committee to assist in the development of a comprehensive healthcare professional outreach strategy and ABTAs Program Effectiveness Assessment.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
Name | Title | Hours Per Week | Total Salary |
Elizabeth Wilson | President & CEO | 38.75 | $198,088 |
Kerri Mink | Chief Operating Officer | 38.75 | $103,880 |
Brandon Starkoff | DIRECTOR | 1 | $0 |
Mindee J Plugues | DIRECTOR | 1 | $0 |
Jacqueline Lemke | DIRECTOR | 1 | $0 |
Alison E Miller | Director | 1 | $0 |
Carla Varner | TREASURER | 1 | $0 |
Craig Stokely | DIRECTOR | 1 | $0 |
Bob Kruchten | DIRECTOR | 1 | $0 |
James Reilly | Secretary | 1 | $0 |
James Zhang | DIRECTOR | 1 | $0 |
Brian Olson | VICE CHAIR | 1 | $0 |
Susannah Davis | DIRECTOR | 1 | $0 |
Jeff Fougerousse | Chair | 1 | $0 |
Ram Subramanian | DIRECTOR | 1 | $0 |
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