2019-06-19T08:03:17-07:00 2018-12-31 990 2018-01-01 411984675 CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION CHIL 6129286325 201 Chicago Ave Minneapolis MN 55415 Amy Brin Executive Director 8595230265 2019-06-19 208.87.234.180 2018 2019-02-21 02:37:17Z Amy Brin CEO 201 Chicago Ave Minneapolis MN 55415 1842222 0 X www.childneurologyfoundation.org X 1972 MN Committed to serving as a collaborative center of education and support for children and families living with neurological conditions. CNF's Board of Directors has established programmatic priorities in the following areas, including transitions of care, peer support, disease education and awareness, collaborative models of advocacy, grants and scholarships, and improving communication between health care provider and patients/ caregivers. 15 15 0 16 0 0 840999 1454513 242502 397083 17224 -9974 6050 600 1106775 1842222 290730 256510 0 0 426324 480357 0 61500 173223 396191 492332 1113245 1290699 -6470 551523 1874530 2395696 506906 476549 1367624 1919147 X Committed to serving as a collaborative center of education and support for children and families living with neurological conditions. CNF's Board of Directors has established programmatic priorities in the following areas, including transitions of care, peer support, disease education and awareness, collaborative models of advocacy, grants and scholarships, and improving communication between health care provider and patients/ caregivers. 1 0 202840 198910 206616 Since 2001, CNF has awarded over $ 3.5 million dollars to research endeavors of 69 young investigators, aimed at identifying treatments and cures for pediatric neurological diseases. Grants support translational, clinical, or basic research by child neurologists early in their academic careers. 366572 30000 491664 Through CNF's collaborative, multi-stakeholder framework, various community support efforts are offered including patient/caregiver education programming, clinical tools, resource navigation, and a peer support virtual network. In 2018, CNF's peer support network served families in 45 states and 64 countries. Additionally, CNF provides community and family grants to support these efforts. CNF interfaces with the larger community via community events and exhibitions, web site, social media, and webinars. 195058 27600 223704 CNF serves as a convener in the child neurology community related to education and advocacy efforts, demonstrated by infantile spasms action network (27 national and international organizations collaboratively advocating for disease awareness), Transition Project Advisory Committee (TPAC; providers, caregivers and industry collaborating around the issues of transitioning young adults into the adult health care system); and an annual education initiatives (topics include sudden unexpected death in epilepsy, disruptive and harmful behavior management). 0 0 0 764470 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 0 0 0 1 0 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 24 0 1 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 X 15 15 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 KY MN X X Amy Brin 6129286325 201 Chicago Ave Minneapolis MN 55415 Dr Ann Tilton President 1 X X 0 0 0 Dr Scott Pomeroy President Elect 1 X X 0 0 0 Stephen Peters Treasurer 1 X X 0 0 0 Dr Shaun Hussain Secretary 1 X X 0 0 0 John Hutchins Director 1 X 0 0 0 Julie Gilbert Director 1 X 0 0 0 Dr Thomas Langan Director 1 X 0 0 0 Dr Jonathan Mink Director 1 X 0 0 0 Sandra Cushner Weinstein Director 1 X 0 0 0 Sue Yudovin Director 1 X 0 0 0 Dr Mary Zupanc Director 1 X 0 0 0 Matthew S Collier Director 1 X 0 0 0 Anup Patel Director 1 X 0 0 0 Phillip Pearl Director 1 X 0 0 0 Dr W Donald Shields Honorary Director of BOD 1 X 0 0 0 Roger Larson Ex-Officio Director 1 X 0 0 0 Amy Brin Miller Director Non-Voting Member Exective Director 41 X X 148574 0 39162 Stephanie Mucha Director, Collaborative Programs & Initiatives 41 0 X X 107999 0 22781 256573 0 61943 1 1 1 0 0 0 0 0 0 0 1454513 0 1454513 Membership Dues 900099 397083 397083 0 0 0 0 0 0 397083 -9974 -9974 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Miscellaneous Revenue 900099 600 600 0 0 0 0 0 0 600 1842222 387709 0 0 X 256510 256510 0 0 0 0 0 0 256571 172073 33832 50666 0 0 0 0 106950 71727 14103 21120 32585 32585 0 59183 0 59183 0 25068 0 25068 0 25750 13081 8832 3837 0 0 0 0 6947 0 6947 0 0 0 0 0 61500 61500 652 652 0 0 184488 139876 35693 8919 28070 3070 25000 0 40214 19898 16436 3880 1323 243 433 647 0 0 0 0 19042 0 19042 0 92866 45839 35844 11183 0 0 0 0 83045 41501 30073 11471 423 0 423 0 0 0 0 0 2549 2549 0 6963 0 6963 0 1290699 764470 353006 173223 1056687 1259643 0 0 684318 1001037 0 0 0 0 0 0 0 0 0 0 534 4347 30347 15294 2569 15053 0 0 0 0 0 0 0 0 130422 115616 1874530 2395696 107141 119573 297682 296976 102083 60000 0 0 0 0 0 0 0 0 0 0 0 0 506906 476549 X -136065 -29650 1403689 1848797 100000 100000 1367624 1919147 1874530 2395696 551523 0 0 0 0 0 X 0 1 X 1 0 X 1191713 491002 1307084 740999 1454513 5185311 0 0 0 0 0 0 0 0 0 0 0 0 1191713 491002 1307084 740999 1454513 5185311 3182589 2002722 382 310 3897 17224 -9974 11839 0 0 0 0 0 0 1002 2001 2000 6050 600 11653 5208803 0.38449 0.3574 X Schedule A, Part II, Line 10 Miscellaneous revenue 130442 0 -9974 4852 0 0 115616 116649 0 17224 3431 0 0 130442 118282 0 3897 5530 0 0 116649 117978 0 310 0 0 0 118288 0 117590 382 0 0 0 117972 0 0.865 0.135 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 30347 0 15294 15053 15053 0 0 X 1842222 0 0 0 0 0 1842222 0 0 0 1842222 1290699 0 0 0 0 0 1290699 0 0 0 1290699 Schedule D, Part V, Line 4 In 2010, the Society of Neurodevelopmental Disabilities (NDD) dissolved, and thereby, transferred remaining assets to the CNF. These funds are intended to endow an annual educational scholarship for medical student interested in the field of child neurology, with priority given to an applicant focused on neuro-developmental disabilities. The initial award is to be $3,500. The amount or the number of awards may be adjusted based on endowment value and as approved by the board of CNF. Schedule D, Part X, Line 2 The Foundation is organized and operates on a not-for-profit bases and its tax exempt status has been recognized by the internal revenue service under section 501(c)(3). The foundation is classified as an organization which is not private foundations under the internal revenue code and charitable contributions by donors of tax deductible. The Foundation is subject to unrelated business income under the internal revenue code for federal and state purposes. The Foundation follows the provisions of FASB, which requires that a tax position be recognized or derecognized based on a "more likely than not" threshold. This applies to positions taken or expected to be taken in a tax return. The Foundation does not believe its financial statements include any uncertain tax positions. The Foundation's tax returns are subject to review and examination by federal authorities. X X X X 1 Burton Strategies Inc 2920 Neilson Way Suite 501 Santa Monia CA 90405 Burton Strategies devised a strategic development plan, initiated building of a major donor base, and evaluated and established a donor stewardship program. Burton Strategies also helped cultivate the multi-year IMPACT campaign. 0 85000 61500 23500 85000 61500 23500 CA KY MN 1 Boston's Children's Hospital Awardee April Levin PO BOX 414413 Boston MA 022414413 042774441 501c3 100000 2018 PERF Shields Grant Baylor College of Medicine Awardee Hsiao-Tuan Chao PO Box 301207 Dallas TX 753931207 741613878 501c3 100000 2018 PERF Elterman Research Grant Child Neurology Society 1000 West County Rd E Suite 290 Saint Paul MN 551268096 237359775 501c3 30000 2018 Unrestricted Symposium Grant 3 0 Schedule I, Part I, Line 2 Since 2001, the CNF has attracted premier young investigators for its awards. We publicize the award to request candidates with the American Academy of Neurology; Professors of Child Neurology; Child Neurology Society; and the Academy of Pediatrics. Applications reviewed via a defined methodology community. Upon grant award, recipients sign a contract with CNF which outlines expectations for reporting during and at the conclusion of the grant award. CNF manages the execution of the grant administration and reporting throughout the grant duration. Child neurologist researcher applicants are asked to submit a letter of application. These letters are ranked by a committee of well-respected child neurologists. (Members avoid conflict of interest by recusing themselves.) Top contenders are invited to submit full applications. CNF uses a hybrid of the NIH research application. The committee then ranks and submits the top applicant to the CNF Board of Directors for confirmation. Outside donors are not involved in the selection of the awardee or any guidelines regarding the use of research funds. Grant award checks are never made payable to the individual researcher. Rather, checks are made payable to the institutions for which they either work or go to school. Reports are required of the researcher at the midpoint of their research in the form of progress reports and at the end to show the results of their research. In the case of scholarship recipients, the same is true. Check are made payable to their institution and their reports are due at the end of their research. Additionally, starting in 2016, CNF provided grants to support organizations' efforts in increasing infantile spasms awareness. To be eligible for an award, an organization needs to be a member of infantile spasms action network and complete the grant application. If all criteria on the application was met, then the organization was cut a check. Each organization awarded was required to submit a reconciliation report 90-days after the completion of their awareness building activity concluded. X X X X 0 0 0 0 0 0 0 0 0 Amy Brin Miller Director Non-Voting Member Exective Director 131454 0 0 0 17119 0 16295 0 22867 0 187735 0 0 0 Schedule J, Part I, Line 3 Child Neurology Foundation (CNF) shares employees with American Academy of Neurology (AAN) through a contractual arrangement by which AAN's employees are leased to CNF. This arrangement included, as of 2018, the Foundation's Executive Director being leased through AAN. The CNF's Board of Directors is responsible for hiring and setting the compensation for the Executive Director. The Board employs procedures (use of independent consultant, compensation survey and no involvement of persons with conflict of interest) and last set compensation amounts in 2018. Other key employees leased from AAN compensation is established (using independent consultant, employment agreements, compensation survey and approval by board) by AAN's compensation committee (and approved by the AAN board). Form 990, Part III, Line 2 In 2018, CNF launched a pilot project aimed at improving the rate of physician disclosure to patient/ caregiver of the risk of death related to epilepsy. National data indicated that less than 10% of neurologists disclose the risk of sudden unexpected death in epilepsy (SUDEP); while over 90% of families indicate wanting to know of this risk at the time of diagnosis. Via the CNF launched pilot, and its use of health information technology to support the discussion, the rare of disclosure was increased from 22% to 50% in five pilot sites. CNF will explore further use of this technology in subsequent use to improve communication between child neurologists and patients/ caregivers. Form 990, Part VI, Section B, Line 11b The CEO undertook extensive review of the draft form 990 prior to presenting to the finance committee for their review. The final form 990 is presented to the Board of Directors for their review and approval prior to filing. Form 990, Part VI, Section B, Line 12c The Foundation has a Conflict of Interest policy covering all board members. Board members complete a policy form on an annual basis which is monitored and reviewed by board officers after submission. Should a conflict exist, the board would determine the appropriate action including omission from voting on any related matters and document in the meeting minutes. Form 990, Part VI, Section B, Line 15 In 2018, the Foundation's Executive Director was leased to the Foundation through a contractual relationship with the American Academy of Neurology. The Foundation's Executive Committee is responsible for hiring and setting the compensation of the Executive Director. The Committee employs procedures (use of compensation surveys and board approval) and last set compensation in 2018. Form 990, Part VI, Section C, Line 19 The Foundation does not make its governing documents or Conflict of Interest policy available to the public. The organization's financial statements are available to the public upon request. Form 990, Part IX, Line 11g The Child Neurology Foundation spent $184,488 in 2018 on contractors with specialized skills to assist with implementing program initiatives, event staffing, and marketing efforts.