2020-05-27T09:01:03-07:00 2019-12-31 990 2019-01-01 411984675 CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION CHIL 6129286325 201 Chicago Ave Minneapolis MN 55415 Amy Brin Executive Director 8595230265 2020-05-27 208.87.234.180 2019 2021-01-29 14:40:06Z Amy Brin CEO 201 Chicago Ave Minneapolis MN 55415 2347419 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. 16 16 0 33 0 0 1454513 1823166 397083 495000 -9974 29253 600 0 1842222 2347419 256510 269126 0 0 480357 615184 61500 112500 290075 492332 812536 1290699 1809346 551523 538073 2395696 3025194 476549 567974 1919147 2457220 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. 0 0 203141 200000 0 Research Grants: Since 2001, CNF has awarded over $ 4 million dollars to research endeavors of 45 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. In 2019, CNF awarded two $100,000 research grants. 670313 34075 1226171 Community Support: 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. Since 2017, CNF's peer support network has served 811 families in 50 states and 75 countries. In 2019, CNF served 235 families through the peer support network. 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. 147453 34000 252183 Community Education: CNF serves as a convener in the child neurology community related to education and advocacy efforts, demonstrated by infantile spasms action network (25 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 1020907 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 1 1 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 34 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 16 16 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CA KY MN X X Amy Brin 6129286325 201 Chicago Ave Minneapolis MN 55415 Matthew S Collier Director 1 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 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 Donald Pearl Director 1 X 0 0 0 Dr M Scott Perry Director 1 X 0 0 0 Stephen Peters Treasurer 1 X X 0 0 0 Dr Shaun Hussain Secretary 1 X X 0 0 0 Dr Anup Patel President-Elect 0 X X 0 0 0 Dr Ann Tilton Past-President 1 X X 0 0 0 Dr Scott Pomeroy President 1 X X 0 0 0 Dr Jonathan Mink Ex-Officio Director 1 X 0 0 0 Dr Phillip Pearl Ex-Officio Director 1 X 0 0 0 Roger Larson Ex-Officio Director 1 X 0 0 0 Dr W Donald Shields Honorary Director of BOD 1 X 0 0 0 Amy Brin Director Non-Voting Member Exective Director 45.00 0 X X 195932 35982 0 195932 35982 0 1 0 1 0 Burton Strategies Inc 2920 Neilson Way Suite 501 Santa Monica CA 90405 Professional fundraising consultant 112500 1 0 0 81322 0 5275 1736569 0 1823166 Corporate Advisory Board Membership Dues 900099 495000 495000 0 0 0 0 0 0 495000 29253 29253 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 0 2347419 524253 0 0 X 243126 243126 21000 21000 5000 5000 0 0 195931 78583 84793 32555 0 0 0 0 263554 105705 114058 43791 43153 17308 18675 7170 81728 32779 35369 13580 30818 12360 13337 5121 50000 19693 21734 8573 0 0 0 0 7625 0 7625 0 0 0 0 0 112500 112500 578 578 0 0 347954 265148 55596 27210 2520 2395 0 125 38707 16741 20151 1815 5001 26 4540 435 0 0 0 0 29792 15822 7023 6947 179868 110143 52341 17384 0 0 0 0 132859 72993 46997 12869 0 0 0 0 0 0 0 0 7614 0 7614 0 6612 0 6612 0 Dues and Subscriptions 3406 1507 1899 0 0 0 0 0 1809346 1020907 498364 290075 1259643 1514720 0 0 1001037 1351229 0 0 0 0 0 0 0 0 0 0 4347 2182 49954 22908 15053 27046 0 0 0 0 115616 130017 2395696 3025194 119573 184827 296976 298147 60000 85000 0 0 0 0 0 0 0 0 0 0 0 0 476549 567974 X -29650 252126 1948797 2205094 1919147 2457220 2395696 3025194 538073 0 0 0 0 0 X 0 1 X 1 0 X 491002 1307084 740999 1454513 1823166 5816764 0 0 0 0 0 0 0 0 0 0 0 0 491002 1307084 740999 1454513 1823166 5816764 3719959 2096805 310 3897 17224 -9974 29253 40710 0 0 0 0 0 0 2001 2000 6050 600 0 10651 5868125 0 0.35732 0.38449 X Schedule A, Part II, Line 10 Miscellaneous Revenue RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 115616 0 20183 5782 0 0 130017 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 0.769 0.231 1 0 0 0 0 0 0 0 0 0 0 0 0 19072 0 2418 16654 30882 0 20490 10392 27046 0 0 X 2354609 0 7190 0 0 7190 2347419 0 0 0 2347419 1816536 7190 0 0 0 7190 1809346 0 0 0 1809346 Schedule D, Part V, Line 4 In 2010, the Society of Neurodevelopmental Disabilities (NDD) dissolved, and thereby, transferring remaining assets to 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 basis 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 (IRC) and charitable contributions by donors are tax deductible. The Foundation is subject to unrelated business income taxes under the IRC for federal and state tax 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. 1 Europe (including Iceland and Greenland) 0 0 Grantmaking UK INFANTILE SPASMS TRUST 5000 North America (including Canada and Mexico, but not the United States) 0 2 Program Services ALTAIRA NORTHE 117,173.16 AKEENA LEGALL 12,315.35 129589 0 2 134589 0 0 0 0 0 0 Schedule F, Part I, Line 2 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 are met then the organization received a grant 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 X X 1 Burton Strategies Inc 2920 Neilson Way Suite 501 Santa Monica CA 90405 Burton Strategies devised a strategic development plan, initiated building of a major donor base, and evaluated and established a donor stewardship program. 0 0 112500 -112500 0 112500 -112500 CA KY MN 1:26 The Art of Epilepsy Newport Beach, California 46911 46911 0 0 0 0 659 0 15043 1:26 The Art of Epilepsy Minneapolis, Minnesota 34411 34411 0 0 0 0 6767 0 16342 0 81322 81322 0 0 0 0 7426 0 31385 38811 -38811 1 Boston Children's Hospital Awardee Alexander Li Cohen MD PhD PO Box 414413 Boston MA 022414413 222678594 100000 2019 PERF Shields Research Grant The Rockefeller University Awardee Isaac Marin-Valencia MD 1230 York Avenue Box 259 New York NY 10065 131624158 501c3 100000 2019 PERF Elterman Research Grant Child Neurology Society 1000 West County Road E Suite 290 Saint Paul MN 551268096 237359775 501c3 30000 2019 Unrestricted Symposium Grant 2 1 RISE Grant - Grants to support families living with infantile spams, which are intended to help families by offsetting expenses that may only be partially covered by insurance or not at all. In the past, families have utilized these grants for items such: durable medical equipment, assistive technology, therapy services, respite care, etc. 20 1000 Harnett Grant - founded in 2014 by Mr. Michael Harnett as an enduring memorial to his nephew, Brendan Michael Harnett. Brendan was diagnosed with infantile spasms and passed away before his first birthday. CNF gratefully partnered with the Harnett family again in 2019 to honor Brendan through the offering of one $1,000 grant to assist families living with infantile spasms. 1 1000 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 American 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 Director Non-Voting Member Exective Director 177928 0 17500 0 504 0 19223 0 16758 0 231913 0 17500 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). Sociale Haus LLC Employer of the spouse of a board member. 3878 Event Planning Services 0 Schedule L, Part IV The CNF board approved a motion to accept the event planning services contract with Sociale Haus LLC. The board member whose spouse is employed by Sociale Haus LLC indicated they had a conflict of interest and recused them self from the board vote, following the CNF Conflict of Interest policy. 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 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 the 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 2019, 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 2019. Form 990, Part VI, Section C, Line 19 The Foundation does not make its governing documents of 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 $347,950 in 2019 on contractors with specialized skills to assist with implementing program initiatives, event staff, and marketing efforts.