2025-11-08T15:21:45-07:00 2024-12-31 334444682 Taveren Consulting LLC 1857 Cedar Drive New Brighton MN 55112 990 2024-01-01 411984675 CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION CHIL 8884173435 PO Box 1226 Lexington KY 40588 Kimberly Hindery CEO 8884173435 2025-11-09 1 1 Lindsey Taveren P03338771 2185651091 2025-10-12 X 2024 2025-03-06 01:10:19Z Child Neurology Foundation Kimberly Hindery 210 E High Street PO Box 1226 Lexington KY 40588 1263681 0 X https://www.childneurologyfoundation.org/ X 2000 MN To serve as a collaborative center of education, resources, and support for children and their families living with neurologic conditions, and facilitate connection with medical professionals who care for them. 14 14 12 14 0 0 2401347 636334 669258 566515 70749 57568 4863 3264 3146217 1263681 373923 245738 0 0 1801668 1165761 0 5000 345620 1273751 469334 3449342 1885833 -303125 -622152 2028346 739008 1142979 469604 885367 269404 X The mission of the Child Neurology Foundation is to serve as a collaborative center of education, resources, and support for children and their families living with neurologic conditions, and facilitate connection with medical professionals who care for them. The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures. Our expanding network of patients and caregivers, volunteers and advocates, researchers and clinicians is committed to helping one another along the path that leads to the best quality of care - and the highest quality of life-for every child. 0 1 309261 240000 0 RESEARCH GRANTS: Since 2001, CNF has proudly awarded grants and scholarships totaling over $6.3M to child neurologists, medical students, institutions, and researchers who are working on treatments and cures for pediatric neurologic diseases. To further the study of solutions in the areas of Transition of Care and Care Coordination, the Foundation awarded thirteen organizations $26,000 Quality Improvement Grants in 2024. To further support and interest in the field of child neurology, the Foundation awarded four Dr. Kenneth F. Swaiman Medical Student Scholarships in the amount of $6,000 for medical students interested in exploring a career in child neurology, plus $1,500 travel stipend for attendance at the Child Neurology Society Annual Meeting. The Foundation further awarded the annual Neurodevelopmental Disabilities Summer Research Scholarship of $3,500 to a medical student who has an interest in training in neurodevelopmental disabilities or child neurology. 613781 3500 11515 COMMUNITY SUPPORT AND EDUCATION: In 2024 , CNF's largest program provided emotional support to over 750 families, reached over 460 clinicians with education, and built collaborations with over 91 other patient advocacy organizations via the Neurology Social Services Network (NSSN). Through the NSSN CNF provides access to local service organizations such as food shelves, transportation assistance, and housing assistance. In 2024, the NSSN processed 1023 referrals providing resources across 48 states. In 2024 education program topics included family support, digital access, transition of care, shortening the diagnostic odyssey, care coordination, preventing epilepsy deaths, and clinical trials. CNF also collected insights from families and child neurologists via surveys and focus groups. This information influences the development of CNF programming going forward. 0 0 0 923042 1 1 0 1 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 18 0 12 1 0 0 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 AK AL AR CA CO CT DC FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X Taveren Consulting LLC 2185651091 PO Box 1226 Lexington KY 40588 Amy Brin Jan - Feb Executive Director 40 0 X 312275 0 13646 Lindsey Taveren Jul - Dec Interim Executive Director 40 0 X 113844 0 44592 Allyson Eyermann Deputy Director 40 0 X 121718 0 27061 Breanna McCormley Mar - Jul Interim Executive Director 40 0 X 76190 0 23680 Dr Donald Pearl Director 2 0 X 0 0 0 Dr Alison Christy Director 1 0 X 0 0 0 Dr Geetanjali Rathore Director 2 0 X 0 0 0 Jason Schmidt Director 2 0 X 0 0 0 Jason Vinson Director 0.5 0 X 0 0 0 Dr Madeline Chadehumbe Director 2 0 X 0 0 0 Dr Sonika Agarwal Director 2 0 X 0 0 0 Tristin West Director 2 0 X 0 0 0 Dr Peter Kang Ex Officio Child Neurology Society President 0.5 0 X 0 0 0 Dr Yasmin Khakoo Ex Officio Child Neurology Society President Elect 4 0 X 0 0 0 Monique Terrell Ex Officio Child Neurology Society Executive Director Non-voting Member 0.25 0 X 0 0 0 Dr Mary Zupanc Ex Officio Honorary Director Non-voting member 4 0 X 0 0 0 Dr W Donald Shields Ex Officio Honorary Director Non-voting member 2 0 X 0 0 0 Stephen Peters President 5 0 X 0 0 0 Dr M Scott Perry President Elect 4 0 X 0 0 0 Dr Ann Tilton Past President 2 0 X 0 0 0 Dr John Millichap Secretary 2 0 X 0 0 0 Dr Rebecca Schultz Feb - Dec Treasurer 2 0 X 0 0 0 Dr Amaris Sanchez Larragoity Director 2 0 X 0 0 0 Dr Shaun Hussain Secretary 2 0 X 0 0 0 Timothy Engel Jan Treasurer 0 0 X 0 0 0 624027 0 108979 2 0 1 0 0 0 0 0 0 22075 614259 0 636334 Corporate Advisory Board 900099 555000 0 0 555000 Peer Support Program Webinars 611430 11515 11515 0 0 0 0 0 0 566515 57568 57568 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 3264 3264 0 0 3264 1263681 72347 0 555000 X 244738 244738 1000 1000 0 0 0 0 409942 62242 235465 112235 0 0 0 0 572795 281523 192553 98719 0 0 0 0 138688 71329 42705 24654 44336 22802 13652 7882 26503 7627 14543 4333 14238 3409 10829 0 19906 0 19906 0 10000 10000 0 0 5000 5000 0 0 0 0 81015 65466 11724 3825 322 185 0 137 7789 934 3674 3181 163249 87745 30420 45084 0 0 0 0 34165 13077 14699 6389 36957 17597 5631 13729 0 0 0 0 4826 3470 1281 75 1450 0 1450 0 0 0 0 0 58648 29898 8723 20027 9672 0 9672 0 Dues and Subscriptions 594 0 244 350 0 0 0 0 1885833 923042 617171 345620 233234 55629 666148 227503 411531 194774 1300 4 0 0 0 0 0 0 0 0 23154 14161 39286 32008 20317 7278 493398 144384 0 0 0 0 146511 95275 32753 0 2028346 739008 460055 100604 442269 241000 125000 58000 0 0 0 0 0 0 0 0 80000 70000 35655 0 1142979 469604 X 30996 -121158 854371 390562 885367 269404 2028346 739008 -622152 6189 0 0 0 0 X 1 X 1 X 1 0 X 2984818 2551727 1169746 2401347 636334 9743972 0 0 0 0 0 0 0 0 0 0 0 0 2984818 2551727 1169746 2401347 636334 9743972 4086101 5657871 16769 17275 -50465 126127 63760 173466 0 0 0 0 0 0 2250 1750 2000 34127 3264 43391 9960829 57313 0.56801 0.54763 X Schedule A, Part II, Line 10 Retired equipment sale and CNF staff honoraria RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 30255 30255 1855580 1885835 244292 61073 0 0 0 5161 322470 244292 571923 857885 0 0 162809 30255 193064 0 0 80618 61073 141691 212537 0 0 0 0 0 Schedule C, Part II-A, Line 1b The Child Neurology Foundation aims to raise awareness and influence policy changes to improve the lives of children facing neurological challenges and their families. We engage in lobbying activities to directly communicate our organization's goals and perspectives to policymakers. In building relationships with legislators and their staff, we work to educate them about the needs and concerns of children with neurological conditions and their families. Our lobbying efforts focus on proposing and supporting legislation that promotes access to quality healthcare, inclusive education, and social support systems. 121082 0 27677 3500 1471 875 142913 113022 100 12335 3500 0 875 121082 134075 700 -16454 3500 429 1370 113022 133951 0 4974 3500 0 1350 134075 130017 0 8783 3500 0 1349 133951 0 0.832 0.168 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 39286 0 32008 7278 7278 0 0 X 1385331 6192 115458 0 0 121650 1263681 0 0 0 1263681 2001293 115460 0 0 0 115460 1885833 0 0 0 1885833 Schedule D, Part V, Line 4 In 2010, the Society of Neurodevelopmental Disabilities (NDD) dissolved, and thereby, transferred remaining assets to CNF. These funds are intended to endow an annual educational scholarship for medical students interested in the field of child neurology, with priority given to an applicant focused on neuro-developmental disabilities. The annual award amount is currently $3,500 with an allowance for travel expenses to CNS as approved by the NDD Committee. The amount or number of awards may be adjusted based on endowment value 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 sections 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 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 University of Louisville Research Foundation Inc 2215 S Brook Street Louisville KY 40208 611029626 25000 2023 Quality Improvement Grants Continued - $25000 Washington University 7425 Forsyth Boulevard MSC 1299-414-355 St Louis MO 63105 430653611 19000 2024 Swaiman Scholarship - $6000; 2024 Quality Improvement Transition of Care Grant - $13000 St Marys Hospital for Children 29-01 216th Street Bayside NY 11360 111679599 13000 2024 Quality Improvement Transition of Care Grant - $13000 Regents of the University of Colorado Anschutz Medical Campus Anschutz Medical Campus Bldg 500 W1126 13001 E 17th Place Aurora CO 80045 846000555 13000 2024 Quality Improvement Transition of Care Grant - $13000 ChildServe Foundation Inc 5406 Merle Hay Road Johnston IA 50131 421157665 13000 2024 Quality Improvement Care Coordination Grant - $13000 The Trustees of Columbia University 630 West 168th Street New York NY 10032 135598093 13000 2024 Quality Improvement Care Coordination Grant - $13000 Childrens Mercy Hospital 2401 Gillham Road Kansas City MO 64108 440605373 13000 2024 Quality Improvement Transition of Care Grant - $13000 Angelman Syndrome Foundation Inc 3015 E New York St Ste A2 PMB 285 Aurora IL 60504 593092842 13000 2024 Quality Improvement Transition of Care Grant - $13000 Hugo W Moser Research Institute at Kennedy Krieger Inc 801 N Broadway Baltimore MD 21205 521524967 13000 2024 Quality Improvement Transition of Care Grant - $13000 Children Hospital Corporation dba Boston Childrens Hospital 300 Longwood Avenue Boston MA 02115 042774441 13000 2024 Quality Improvement Transition of Care Grant - $13000 Children's Research Institute 111 Michigan Avenue NW Washington DC 20010 521654453 13000 2024 Quality Improvement Care Coordination Grant - $13000 Boston Medical Center Corporation 1 Boston Medical Center Place Boston MA 02118 043314093 13000 2024 Quality Improvement Transition of Care Grant - $13000 The General Hospital Corporation dba Massachusetts General Hospital 55 Fruit Street Boston MA 02114 041564655 13000 2024 Quality Improvement Care Coordination Grant - $13000 Baylor College of Medicine One Baylor Plaza Houston TX 77030 741613878 13000 2024 Quality Improvement Care Coordination Grant - $13000 University of Pittsburgh of the Commonwealth PO Box 640458 Pittsburgh PA 15264 250965591 12500 2023 Quality Improvement Grant Continued - $12500 Case Western Reserve University 10900 Euclid Avenue Cleveland OH 44106 341018992 6000 2024 Swaiman Scholarship - $6000 Virginia Commonwealth University PO Box 843035 Richmond VA 23284 546001758 6000 2024 Swaiman Scholarship - $6000 The University of Central Florida Board of Trustees 12424 Research Parkway Suite 300 Orlando FL 32826 592924021 6000 2024 Swaiman Scholarship - $6000 20 20 Schedule I, Part I, Line 2 Since 2001, the CNF has attracted premier young investigators for its awards. We publicize awards to request candidates with the American Academy of Neurology, Professors of Child Neurology, Child Neurology Society, and the American Academy of Pediatrics. Applications are reviewed via a defined methodology community and applicants are asked to submit a letter of application. These letters are ranked by a committee of well-respected 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. 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. 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 of their research. X X X X 1 0 0 0 0 0 0 0 0 Amy Brin Jan - Feb Executive Director 0 0 0 0 312275 0 7712 0 5934 0 325921 0 339101 0 Lindsey Taveren Jul - Dec Interim Executive Director Non-voting Ex-Officio 113789 0 0 0 55 0 8167 0 36425 0 158436 0 0 Schedule J, Part I, Line 3 Child Neurology Foundation contracted with TriNet, a cloud-based professional employer organization (PEO), and all employees of the CNF are co-employees with TriNet. The CNF's Board of Directors is responsible for hiring and setting the compensation of the Executive Director. The Board employs procedures including: a separate compensation committee, use of a compensation survey/study, review of other organization's 990s, and no involvement of persons with conflict of interest. The Board last set compensation in 2025. Schedule J, Part I, Line 4 The former Executive Director Amy Brin signed a resignation contract in late 2023 with the Board of Directors which included severance pay to be distributed after the negotiated final date of employment March 1, 2024. The severance package was accrued in the Foundation's 2023 personnel expenses as well as included on the 2023 990 Part VII, Column F "Other Compensation" as well as in Schedule J, Column C "Retirement and other deferred compensation". On the 2024 990 Part VII, the severance pay is located in Part VII, Column D & F reflecting the actual payments and in Schedule J Column B(iii), C and D reflecting the actual payments. It also is reflected in Schedule J, Column F "Compensation in (b) reported as deferred on prior form 990". Schedule J, Part I, Line 7 All Foundation staff are eligible for an annual bonus, contingent on organizational financial position, typically paid in January for the prior year's work. The Board Compensation Committee determines the bonus of the Executive Director based on the year end performance review. The Executive Director determines staff eligibility based on annual performance reviews. No accrued 2023 bonuses were awarded to paid in 2024, and no 2024 bonuses were awarded and accrued to be paid in 2025. Form 990, Part III, Line 3 Within the Community Education & Support category, the multi-year CHICA-CN project concluded in 2023, and thus in 2024 did not incur program expenses for the first time since 2018. Within the Research Grants category, starting in 2024 the Foundation no longer administers the annual Pediatric Epilepsy Research Foundation (PERF) Shields and Eltermann Research Grants totaling $350,000. Form 990, Part VI, Section A, Line 4 During the fiscal year 2024, Child Neurology Foundation made significant changes to its governing documents. These changes were implemented to enhance the organization's governance structure and adapt to the evolving needs of our organization and the communities we serve (as shown at this narration's close). These changes were undertaken after thorough review and deliberation by the Board of Directors and in consultation with legal counsel to ensure compliance with all relevant laws, regulations, and best practices. BYLAWS AMENDMENTS: The Child Neurology amended its bylaws to change the requirement that "the majority of the Board shall be Child Neurology Society members" be updated to "a minimum of 30% of the Board shall be child neurologists or neurodevelopmental disabilities specialists." Form 990, Part VI, Section B, Line 11b The Executive Director, Treasurer, and CFO undertook extensive review of the draft IRS Form 990 prior to presenting to the finance committee for review. The final form 990 is further presented to external legal counsel for review, and subsequently submitted to the board of directors for final approval prior to filing. Form 990, Part VI, Section B, Line 12c The Foundation has a conflict of interest policy covering all board members and any other person who has an Officer's role with the Foundation. Board members complete a conflict of interest policy form on an annual basis which is monitored and previewed by the board officers after submission. If a director is uncertain whether a conflict of interest exists, the conflict of interest policy states that it is better to err on the side of disclosure. When a director is aware of a potential conflict of interest the director must promptly disclose the conflict to the chair or to the full Board, as appropriate. The board would determine the severity of the conflict and the appropriate action to take, including omission from voting on any related matters and document in the meeting minutes. In certain cases a director may be removed from an official Foundation capacity if they are not able to divest from the conflicting relationship. Form 990, Part VI, Section B, Line 15 The Foundation's executive committee is responsible for hiring and setting the compensation of the executive director. The committee employs procedures such as using a compensation survey and requiring board approval with only disinterested directors participating for purposes of both quorum and approving compensation. The committee last set compensation in 2022 for Amy Brin. They set compensation for both interim executive directors Lindsey Taveren and Breanna McCormley in 2024. 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 most recent three years of IRS Form 990s and Audited Financials are available at https://www.childneurologyfoundation.org/about-cnf/ Form 990, Part IX, Line 1 Note that grants entered on the statement of functional expenses are net of present value adjustments for multi-year grants payable, whereas on Part III number 4, grant expense was entered gross to fully represent the outgoing awards. Form 990, Part IX, Line 11g The Child Neurology Foundation spent $81K in 2024 on contractor/service providers with specialized skills to assist with program management, event management, meeting and event facilitation, grant writing, and marketing.