2024-11-15T08:23:25-07:00 2023-12-31 990 2023-01-01 411984675 CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION CHIL 8884173435 PO Box 1226 Lexington KY 40588 Lindsey Taveren Director of Finance & Accounting 2147897316 2024-11-15 1 2023 2024-10-15 13:58:12Z Child Neurology Foundation Lindsey Taveren PO Box 1226 Lexington KY 40588 3146217 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. 13 13 12 50 0 0 1169746 2401347 728465 669258 -30731 70749 2000 4863 1869480 3146217 481375 373923 0 0 1510158 1801668 12188 0 407611 1676975 1273751 3680696 3449342 -1811216 -303125 2744200 2028346 1001080 1142979 1743120 885367 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 0 335817 321804 0 RESEARCH GRANTS: Since 2001, CNF has proudly awarded grants and scholarships totaling over $5.2M to child neurologists, medical students, institutions, and researchers who are working on treatments and cures for pediatric ne urologic diseases. To encourage collaboration and increase research, the Foundation awarded a $150,000 Pediatric Epilepsy Research Foundation (PERF) Elterman and a $150,000 PERF Shields Research Grant in 2023 to support clinical or basic science research by a child neurologist or developmental pediatrician early in their academic career who are members of the Child Neurology Society. To further support interest in the field of child neurology, the Foundation also awarded three of the the 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, and the Neurodevelopmental Disabilities Summer Research Scholarship of $3,500 to a medical student who has an interest in training in neurodevelopmental disabilities or child neurology. 1285645 52119 29258 COMMUNITY SUPPORT AND EDUCATION: In 2023 , CNF provided 47 families with Chromebooks and hotspots to better access telehealth, provided emotional support to over 262 families, reached over 460 clinicians with education, and built collaborations with over 68 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 2023, the NSSN processed 300 referrals providing resources across 47 states. In 2023 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 1621462 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 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 27 0 12 1 0 0 0 0 1 1 1 1 0 0 0 0 0 0 X 13 13 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AK AL AR CA CO CT DC FL GA HI IL KS KY LA MA MD ME MI MN MO MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X Lindsey Taveren Interim ED 8595514987 PO Box 1226 Lexington KY 40588 X Amy Brin Executive Director Ex Officio Non-voting Member 45 0 X 294315 0 360845 Breanna McCormley Former Director of Development 45 0 X 139623 0 14070 Dr Amaris Sanchez Larragoity Director 1 0 X 0 0 0 Dr Donald Pearl Director 1 0 X 0 0 0 Dr John Millichap Director 1 0 X 0 0 0 Dr Madeline Chadehumbe Director 1 0 X 0 0 0 Dr Rebecca Schultz Director 1 0 X 0 0 0 Dr Sonika Agarwal Director 1 0 X 0 0 0 Dr Bruce Cohen Ex Officio Child Neurology Society Past President 1 0 X 0 0 0 Dr Peter Kang Ex Officio Child Neurology Society President 1 0 X 0 0 0 Monique Terrell Ex Officio Child Neurology Society Executive Director Non-voting Member 1 0 X 0 0 0 Dr Mary Zupanc Ex Officio Honorary Director Non-voting member 1 0 X 0 0 0 Dr W Donald Shields Ex Officio Honorary Director Non-voting member 1 0 X 0 0 0 Stephen Peters President 7 0 X 0 0 0 Dr M Scott Perry President Elect 3 0 X 0 0 0 Dr Ann Tilton Past President 3 0 X 0 0 0 Dr Shaun Hussain Secretary 2 0 X 0 0 0 Timothy Engel Treasurer 2 0 X 0 0 0 Dr Anup Patel Former President 5 0 X 0 0 0 Dr Scott Pomeroy Former Past-President 1 0 X 0 0 0 433938 0 374915 2 1 1 0 Digital Health Solutions LLC 133 W Market St Number 238 Indianapolis IN 46204 Development of Child Health Improvement through Computer Automation system for child neurology 266370 Artemis Policy Group 1150 Connecticut Avenue NW Suite 803 Washington DC 20036 Advocacy strategy and community organization 114000 2 0 0 7500 0 90394 2303453 0 2401347 Corporate Advisory Board 900099 640000 0 0 640000 Peer Support Program Webinars 611430 29258 29258 0 0 0 0 0 0 669258 70749 70749 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 7500 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 4863 4863 0 0 4863 3146217 104870 0 640000 X 372923 372923 1000 1000 0 0 0 0 656734 46119 557632 52983 0 0 0 0 1076030 399707 426974 249349 0 0 0 0 45981 16900 18143 10938 22923 8425 9045 5453 30597 7707 17325 5565 39747 4665 35082 0 24448 0 24448 0 114000 114000 0 0 0 0 0 0 0 0 557075 460491 79045 17539 10298 3042 3833 3423 11483 499 8546 2438 189518 104748 56545 28225 0 0 0 0 50302 17829 21543 10930 170054 40761 112953 16340 0 0 0 0 6949 5179 1500 270 1650 0 1650 0 0 0 0 0 17915 3059 10719 4137 9613 0 9592 21 Bad Debt Expense 25000 0 25000 0 Dues & Subscriptions 5625 4931 694 0 Digital Access Equipment 9477 9477 0 0 0 0 0 0 3449342 1621462 1420269 407611 170536 233234 1063446 666148 954169 411531 5907 1300 0 0 0 0 0 0 0 0 8896 23154 68146 47829 25987 20317 446669 493398 0 0 0 0 0 146511 68590 32753 2744200 2028346 290630 460055 391965 442269 158000 125000 0 0 0 0 0 0 0 0 90000 80000 70485 35655 1001080 1142979 X 575013 30996 1168107 854371 1743120 885367 2744200 2028346 X -303125 55372 0 0 0 -610000 X 1 X 1 X 1 0 X 1823166 2984818 2551727 1169746 2401347 10930804 0 0 0 0 0 0 0 0 0 0 0 0 1823166 2984818 2551727 1169746 2401347 10930804 4846741 6084063 29253 16769 17275 -50465 126127 138959 0 0 0 0 0 0 0 2250 1750 2000 34127 40127 11109890 0.54763 0.51616 X Schedule A, Part II, Line 1 In the 2021 column there is a -$200K adjustment for a contract amendment with donor for restricted revenue related to research grants. The remaining -$410K restricted revenue adjustment was from a 2018 pledge not represented on this schedule. Schedule A, Part II, Line 10 Retired equipment sale, CNF staff honoraria, and bank credit RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 162809 162809 3286584 3449393 322470 80618 0 0 0 0 5161 322470 327631 491447 0 0 0 162809 162809 0 0 0 80618 80618 120927 0 0 0 0 0 Schedule C, Part II-A, Line 1b The Child Neurology Foundation aims to raise awareness, influence policy changes, and 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. 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 115616 0 20183 3500 0 2282 130017 0 0.832 0.168 0 0 0 0 0 0 0 0 0 0 0 0 0 21803 0 15536 6267 46343 0 32293 14050 20317 0 Lease Liability - Current 35655 35655 X 2662461 55378 70866 0 0 126244 2536217 0 610000 610000 3146217 3520212 70870 0 0 0 70870 3449342 0 0 0 3449342 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 take in a tax return. The Foundation does not believe its financial statements include any uncertain tax positions. The Foundation's tax returns are subject ot review and examination by federal authorities. Schedule D, Part XI, Line 4b In 2023, the Child Neurology Foundation amended a prior year contract with a donor resulting in the removal of $610,000 in restricted revenue earmarked for research grants. 1 Rector and Visitors of the University of Virginia 1001 N Emmet Street Charlottesville VA 22903 546001796 150000 0 2023 PERF Grant - $150,000 University of Utah 201 South Presidents Circle Room 159 Salt Lake City UT 84112 876000525 150000 0 2023 PERF Grant - $150,000 University of Louisville Research Foundation 2215 South Brook Street Louiseville KY 40208 611029629 25000 0 2023 Quality Improvement Grant American Epilepsy Society 135 South LaSalle Street Suite 2850 Chicago IL 60603 046112600 12500 0 2023 Unrestricted Symposium Sponsorships - $12,500 University of Pittsburgh of the Commonwealth PO Box 640458 Pittsburgh PA 15264 250965591 12500 0 2023 Quality Improvement Grant Regents of the University of California 120 Theory Suite 200 Irvine CA 92697 952226406 6000 0 2023 Swaiman Scholar Weill Medical College of Cornell University 1300 York Avenue New York NY 10065 131623978 6000 0 2023 Swaiman Scholar Rush University Medical Center 1700 West Van Buren Street Suite 271B Chicago IL 60612 362174823 6000 0 2023 Swaiman Scholar 10 0 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 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. Checks are made payable to their institution and their reports are due at the end of their research. CNF also provides grants to support projects that improve the quality of care provided to patients and families at the clinic level. These projects can be things like quality improvement projects, research projects, or other clinic process improvements to directly improving the relationships between families and medical professionals. X 1 1 X X X X X 1 0 0 0 0 0 0 1 0 Amy Brin Executive Director Ex Officio Non-voting Member 256364 0 37500 0 450 0 339101 0 21744 0 655159 0 65575 0 Schedule J, Part I, Line 1a In 2023 the Foundation provided the Executive Director with the benefit of Delta Skyclub Membership. Receipts were required to substantiate the expense. 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 2023. Schedule J, Part I, Line 4 The 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 is accrued in the Foundation's 2023 personnel expenses as well as included in Part VII, Column F "Other Compensation" as well as in Schedule J, Column C "Retirement and other deferred compensation". Schedule J, Part I, Line 7 All Foundation staff are eligible for an annual bonus, typically paid in January for the prior year's work. The 2022 bonus paid in 2023 is reflected in part B column ii. There is no 2023 deferred bonus included in Column C. Similarly, on Part VII, the 2022 bonus paid in 2023 is included in column D, and there is no deferred bonus for 2023 included in Column F. 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 2023 bonuses were awarded. Form 990, Part VI, Section B, Line 11b The Interim Executive Director, Treasurer, and Staff Accountant 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 and external counsel 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 and any other person who has an official position 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 that 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 the official Foundation capacity if they are not able ot 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 (use of compensation surveys and board approval) and last set compensation in 2022. 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 financial statements are available at https://www.childneurologyfoundation.org/about-cnf/ Form 990, Part VII, Section B, Line 1(B) Digital Health Solutions LLC: Development of the Child Health Improvement through Computerized Automation - Child Neurology Form 990, Part IX, Line 11g The Child Neurology Foundation spent $557K in 2023 on contractor/service providers with specialized skills to assist with program management, meeting and event facilitation, grant writing, and marketing. The Foundation also spent $266K on a contract with Digital Health Solutions LLC for the development of the Child Health Improvement through Computerized Automation - Child Neurology. Form 990, Part XI, Line 9 Amended a pledge agreement signed in 2018 and 2021 with a donor related to research grants, resulting in the removal of $610K of restricted revenue from prior years.