2015-11-04T08:03:24-06:00 2015-06-30 MILLER COOPER & CO LTD 1751 Lake Cook Road Suite 400 Deerfield IL 60015 990 2014-07-01 237286648 American Brain Tumor Association % ELIZABETH WILSON PRES & CEO AMER 7735778750 8550 W Bryn Mawr Ave Suite 550 Chicago IL 60631 ELIZABETH WILSON PRESIDENT/CEO 7735778750 2015-11-03 true Avrum Katz P00033618 8472055000 2014 2016-03-07 17:11:31Z ELIZABETH WILSON PRES CEO 8550 W BRYN MAWR AVE 550 CHICAGO IL 60631 6156678 false X WWW.ABTA.ORG X 1973 IL SEE ATTACHMENT 1 11 11 32 849 0 4430881 4568654 0 0 391653 301461 342822 281230 5165356 5151345 1371544 1271990 0 0 1948875 2111554 0 0 928622 1273990 1311476 4594409 4695020 570947 456325 4093471 4249649 729573 645383 3363898 3604266 X 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 nonprofit organization dedicated to funding brain tumor research into diagnostics, treatment and care. As well as, providing comprehensive resources to brain tumor patients, caregivers and to the health/medical community. false false 1832572 1011113 0 Program Service 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 awards 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. We also collaborate with other research funders, both in and out of the brain tumor field, to expand the understanding of this disease. We support research that will improve the quality of life of brain tumor survivors and their caregivers. The ABTA Alumni Research Network ensures research collaborations into the future. Through this forum, previously funded ABTA grantees are encouraged to share ideas and gain insights that will shape their careers and the brain tumor landscape. The American Brain Tumor Association's Research 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 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 could lead to scientific breakthroughs. Through this experience, the students are exposed to and learn from the research challenges confronting this disease. - 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 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, 47 of these grants have been awarded. Concepts supported through this funding must be capable of changing the way brain tumors are diagnosed or treated. Funding has been provided for a variety of focus areas including immunotherapy, new biomarkers, nanoparticles and stem cell research. ABTA Discovery Grant funding recently aided the development of two new brain tumor drugs that target malignant gliomas such as glioblastoma multiforme (GBM)-a common and aggressive type of malignant brain tumor. Supports collaborative funding opportunities: - Collaborative Initiatives These efforts support jointly sponsored feasibility, clinical research, and quality of life studies. These grants provide support for projects that are more effectively performed in partnership with multiple organizations or funders. Most recently, ABTA collaboratively awarded a $2 million, two year study that seeks to better understand the characteristics of long term survivors of glioblastoma. The research seeks to identify commonalities and unique differences among a group of 5 year + survivors of this often fatal disease. 874807 147908 0 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 around the country. 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. - Our well-trained team provides one-on-one informational services on ABTA's CareLine by phone or by email, assists patients and caregivers by providing emotional support and providing resources that meet their needs. - Our "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. - 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 (general and cutting-edge) for brain tumor patients, families and health care professionals. Webinars are recorded and can be viewed at any time on the ABTA website. During the last fiscal year, the webinars were viewed nearly 33,600 times. - An annual national, patient-centered conference bringing the nation's 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 locally. - Updates on brain tumor care and treatment through our semiannual newsletter, monthly electronic communications, and regular website postings at www.abta.org. This year, the ABTA supported nearly 3,000 exchanges through its CareLine between well-trained staff and patients, families, caregivers or others seeking help and support in understanding their diagnosis and treatment, assistance navigating the emotional complexities of a brain tumor diagnosis and access to information for local resources. A full range of services and resources are offered, including educational publications; information about community resources; updates on advances in brain tumor care and treatment; and regional meetings for patients, family members and caregivers. The ABTA saw continued growth of its Connections online social networking site this year. Located at www.abta.inspire.com, the site brings together patients, family members, friends and others in similar circumstances to share stories, information and inspiration. This year, the Connections online community grew to nearly 4,500 members. The ABTA is also an advocate for brain tumor patients and their families. We give voice to the needs of brain tumor patients in legislative and regulatory health care issues through our 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, and the Alliance for Childhood Cancer. 537613 112969 0 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 its 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 ABTA's 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 such as the Society for Neuro-oncology, Oncology Nursing Society, Health Research Alliance, American Society for Clinical Oncology, and the American Association of Neuroscience Nurses. These organizations provide the ABTA with opportunities to enhance our visibility within the brain tumor clinical and scientific communities. The ABTA also supports the Response Assessment in Neuro-Oncology annual meeting at which scientists and clinicians are working together to develop guidelines for measuring patient response to treatment. - The ABTA participated in the creation of new brain tumor clinical practice guidelines for both adult and pediatric patients through a collaboration with the American Association of Neuroscience Nurses. - ABTA participates in the periodic review of clinical treatment guidelines of the National Comprehensive Cancer Network. 294112 0 0 3539104 true true false false false false false false false false true false false false true false true false false false false false false false true false false true true true false false false false false false false false false false false false false false false false false true 28 0 32 false false false false false false false false false X 11 11 false false true false false false false true true false false true true true true true true true false false AL AK AZ AR CA CO CT DE DC FL GA ID IL IN KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VA WA WV WI WY X X ELIZABETH WILSON PRES CEO 7735778750 8550 W BRYN MAWR AVE 550 CHICAGO IL 60631 JAY KRAMES Immediate Past Chair 1.0 X X 0 0 0 Barbara Dunn Vice Chair 1.0 X X 0 0 0 Jeff Fougerousse Chair 1.0 X X 0 0 0 Susannah Davis DIRECTOR 1.0 0.0 X 0 0 0 BRIAN OLSON TREASURER 1.0 X X 0 0 0 JAMES ZHANG DIRECTOR 1.0 X 0 0 0 JAMES REILLY Secretary 1.0 X X 0 0 0 JEFFERY SMITH DIRECTOR 1.0 X 0 0 0 CRAIG STOKELY DIRECTOR 1.0 X 0 0 0 CARLA VARNER DIRECTOR 1.0 X 0 0 0 Alison E Miller Director 1.0 0.0 X 0 0 0 Elizabeth Wilson President & CEO 38.75 X 192118 0 3465 Deneen Hesser Chief Missions Officer 38.75 X 107258 0 2780 Meg Schneider Chief Advancement Officer 38.75 X 117974 0 0 417350 0 6245 3 false true false 0 2176435 2392219 4568654 0 83957 83957 0 0 0 0 0 691309 0 473805 0 217504 0 217504 217504 772266 2176435 514125 258141 258141 0 29664 17403 12261 12261 OTHER INCOME 900099 10828 10828 10828 5151345 23089 559602 126920 126920 1143070 1143070 2000 2000 0 0 194351 165198 29153 0 0 0 0 0 1552791 1125991 42945 383855 24545 13859 1952 8734 182514 94878 8598 79038 157353 88036 9816 59501 0 0 0 0 43698 14537 29161 0 0 0 0 0 0 0 3239 1777 463 999 197963 149559 26770 21634 64492 27285 0 37207 366585 229664 33173 103748 224566 155455 616 68495 0 0 0 0 0 0 0 0 111283 61287 2043 47953 0 0 0 0 96853 57979 21786 17088 0 0 0 0 0 0 0 0 60088 36053 9013 15022 10380 6228 1557 2595 CREDIT CARD FEES 52418 1494 51 50873 RECRUITING EXPENSE 67116 32635 3487 30994 STATE REGISTRATION 5920 0 5920 0 STAFF DEVELOPMENT/EDUCATION 6652 4979 787 886 223 220 3 4695020 3539104 227294 928622 0 0 1321562 1333221 68717 62862 0 0 0 0 0 0 0 0 26868 49503 76499 123099 552196 249184 286865 303012 2300735 2365727 0 0 0 0 0 0 12225 12225 4093471 4249649 231379 154350 60000 125238 151839 113508 0 0 0 0 0 0 0 0 0 0 286355 252287 729573 645383 X 2960605 3233203 403293 371063 0 0 3363898 3604266 4093471 4249649 456325 -215957 X false true X true false X 3974151 4435641 3798815 4430881 4568654 21208142 0 0 0 0 0 0 0 0 0 0 0 0 3974151 4435641 3798815 4430881 4568654 21208142 263557 20944585 60017 56334 73099 61503 83957 334910 0 0 0 0 0 0 0 0 0 0 0 0 21543052 3654270 0.97222 0.97582 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 252075 100194 151881 163757 92415 71342 136364 56575 79789 303012 0 DEFERRED RENT - LONG-TERM 215735 DEFERRED RENT - CURRENT PORTIO 36552 252287 5013420 -215957 78032 -137925 5151345 5151345 4773052 78032 78032 4695020 4695020 Brkth for Brain 2122208 1533668 588540 416369 Humor to Fight 335409 221704 113705 93063 67 491084 421063 70021 4693 2948701 2176435 772266 514125 514125 258141 true Central Brain Tumor Registry of the US 625 S County Line Road Hinsdale IL 60521 130113 RESEARCH GRANT Bank of America Charitable Gift Fund 225 Franklin Street MA1-225-04-02 Boston MA 02110 25000 Brain Tumor Funders Collaborative from ABTA Humor to Fight the Tumor 16404 Eagle Ridge Drive Minnetonka MN 55345 65575 Research Grant See Attachment 856000 SCHEDULE I, PART IV - MONITORING USE OF GRANT FUNDS The American Brain Tumor Association funds research through five primary programs: the Basic Research Fellowship Program, awarding two-year, $100,000 grants supporting young researchers entering the field of brain tumor research; the Discovery Research Grant Program, one-year, $50,000 grants for high-risk, high-impact projects deemed to have the potential to change current diagnostic or treatment paradigms for adult and pediatric brain tumor care; the Translational Grant Program, one-year, $75,000 grants to researchers working to gather the data necessary to transition research from the laboratory into actual patient treatment and care; the Medical Student Research Fellowship Program, $3,000 grants for ten-to-twelve week summer laboratory experiences; and Collaboratives, the joint funding of feasibility research and clinical studies with professional and other research funding organizations. We also support professional forums and opportunities for data gathering and/or information exchanges among the medical and scientific communities. ABTA Fellowships, Translational Grants, and Fellowships require a written report of outcomes (an abstract) at the conclusion of the funding period. Those completing their award period come to Chicago to report their findings at a poster reception attended by the Board of Directors, Research Committee members, and ABTA constituents. Attendees at that event ask questions and interact directly with the researchers. Print copies of the outcomes reports are distributed at those meetings. Expenditure reports at the conclusion of funding are now also required at the conclusion of the funding period (this was a recent addition). For Fellowships and Translational Grants, unused funds are due back to ABTA. X X X X X X false false false false false false false false false Elizabeth Wilson President & CEO 192118 0 0 0 0 0 0 0 0 0 192118 0 0 0 PART VI, SECTION B, LINE 11A - REVIEW OF 990 Prior to signing and submitting each year's Form 990 and accompanying attachments, all members of the Board of Directors review and comment on the document. If a Board meeting is scheduled within thirty days of the submission date: All Board members receive a copy of the Form 990 and attachments in electronic format. Board meeting materials are sent to Directors approximately a week before the meeting. Directors who are unable to attend the meeting will be invited to submit questions, concerns, or support for the document as drafted prior to the meeting. Such feedback is sent to the President & CEO, the Board Chair, or the Treasurer for inclusion in the discussion of the draft. At the Board meeting, the Chair entertains a motion to authorize the President & CEO to sign and submit the draft as presented or as amended through discussion. A majority of those present can approve the motion. If a Board meeting is not scheduled within thirty days of the submission date: All Board members will be sent a copy of the Form 990 and attachments electronically at least thirty days prior to the submission date. Directors are encouraged to ask questions about, raise issues about, and indicate support for the draft within ten days. Such feedback can be sent to the President & CEO, the Board Chair, or the Treasurer by email or other form of delivery as long as it is received within the ten days. If a Director does not respond within the ten day period, it will be considered that the Director is satisfied with the document as drafted. Any issues raised by Directors within ten days after receiving the draft Form 990 will be reviewed and resolved by the President & CEO, the Treasurer, and a simple majority of the members of the Board's Finance Committee in collaboration, with assistance as needed from the tax preparer. A summary of the changes made to the draft Form 990 and the reasons for the changes will be emailed to all Directors ten days or more before scheduled submission. Should changes by Directors to the new draft of Form 990 be received within seven days, the Board Chair and Treasurer will together decide whether: (1) to proceed with submission and make warranted adjustments though the IRS amendment process; or (2) request an extension for filing and resolve remaining issues at the subsequent Board meeting. PART VI, SECTION B, LINE 12C - CONFLICT OF INTEREST POLICY ENFORCEMENT Each associate (defined as, ABTA directors, officers, volunteers and employees) shall sign an annual conflict of interest disclosure statement, which describes any existing or potential conflict of interest and affirms that such person: A. Has received a copy of the policy; B. Has read and understands the policy; and C. Has agreed to comply with the policy. Annual conflict of interest disclosure statements shall be filed on or before June 30 in the case of employees and on or before the date of the first meeting of the board in each fiscal year in the case of governance volunteers. It shall be the continuing responsibility of associates to scrutinize their transactions and outside business interests and relationships for potential conflicts and to immediately make any necessary disclosures. PART VI, SECTION B, LINE 15 - COMPENSATION REVIEW AND APPROVAL When hiring the President & CEO and other key employees, and thereafter at least every three years, the executive committee of the board will engage in a detailed review of compensation packages to ensure they fit current conditions. As part of this process, the executive committee will review: Salary surveys Written employment contracts Information from 990's filed with the IRS Other information and input as needed sourced through an independent compensation consultant. For positions other than that of President & CEO, the President & CEO may assist in researching compensation information and may recommend compensation packages for key employees. The executive committee will recommend salary levels for key employees to be included in the budget and approved as part of the annual budget approval process. The process and the documents reviewed each time a compensation package for the President & CEO or a key employee is established or assessed will be recorded as the process is occurring. A report on the process will be made at the next meeting of the board of directors and entered into the minutes. PART VI, SECTION C, LINE 19 AVAILABILITY OF GOVERNING DOCUMENTS & POLICIES As part of its accountability to its constituencies and to the public, ABTA is committed to disclosure of organizational information that is appropriate for public viewing. The following ABTA documents are available from ABTA for public inspection upon request: ABTA incorporation papers ABTA By-Laws IRS Form 1023 and supporting documents: application for 501(c)(3) Status IRS determination letter documenting that ABTA is an exempt Organization ABTA's annual 990's filed with the IRS (not including schedule B)-last three filings ABTA's annual report to the Illinois attorney general-last three years. ABTA'S CONFLICT OF INTEREST POLICY FOR BOARD AND STAFF Requests received by mail, phone, fax, or e-mail will be honored by directing the interested party to the appropriate section on the ABTA website. Requests made in-person to view documents at ABTA's offices during ABTA's business hours will be honored that day up until the office closes for the day. Individuals or groups who request hard copies of the documents may be asked to pay, in advance, reasonable copying costs of $.20 per page and postage costs. Documents will be mailed within thirty days of the time payment for copying and postage costs are received. PART VI, SECTION A, LINE 4 Revised By-Laws ABTA is committed to disclosure of organizational information that is appropriate for public viewing. The ABTA by-laws are available from ABTA for public inspection upon request.