2023-07-31T13:40:33-07:00 2022-12-31 990 2022-01-01 411984675 CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION CHIL 8884173435 PO Box 1226 Lexington KY 40588 Amy Brin Executive Director 2147897316 2023-07-31 1 1 11 1 AAL2 X 2022 2023-04-26 12:10:37Z Child Neurology Foundation Amy Brin 601 W Short Street Lexington KY 40508 1869480 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 11 54 0 0 2930859 1169746 608908 728465 13506 -30731 1175 2000 3554448 1869480 332203 481375 0 0 1351864 1510158 52500 12188 324287 1453565 1676975 3190132 3680696 364316 -1811216 4583151 2744200 1009080 1001080 3574071 1743120 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. 1 0 345600 319500 0 RESEARCH GRANTS: Since 2001, CNF has proudly awarded grants and scholarships totaling over $4.87M 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 2022 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 $5,000 for medical students interested in exploring a career in child neurology, plus $1,000 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. 1772329 161875 15965 COMMUNITY SUPPORT AND EDUCATION: In 2022 , CNF provided 75 families with Chromebooks and hotspots to better access telehealth, provided emotional support to over 190 families, reached over 550 clinicians with education, and built collaborations with over 50 other patient advocacy organizations. Program topics included family support, digital access, Infantile Spams Action Network, transition of care, and shortening the diagnostic odyssey, transition of care, care coordination, preventing epilepsy deaths, and clinical trials. CNF also collected insights from over 1,600 families and child neurologists via surveys and focus groups. This information influences the development of CNF programming going forward. 0 0 0 2117929 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 1 1 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 23 0 11 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 Lindsey Taveren Director of Finance 8595514987 PO Box 1226 Lexington KY 40588 X Amy Brin Executive Director Ex Officio Non-voting Member 45.00 0 X 299644 0 85940 Greta Wright Chief Operations Officer 41 0 X 191270 0 79646 Katie Hentges Director of Programs 44 0 X 102756 0 27681 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 M Scott Perry Director 2 0 X 0 0 0 Dr Madeline Chadehumbe Director 1 0 X 0 0 0 Dr Rebecca Schultz Director 2 0 X 0 0 0 Dr Sonika Agarwal Director 2 0 X 0 0 0 Dr Bruce Cohen Ex Officio Child Neurology Society President 2 0 X 0 0 0 Dr Peter Kang Ex Officio Child Neurology Society President-Elect 1 0 X 0 0 0 Dr Anup Patel President 5 0 X X 0 0 0 Dr Scott Pomeroy Past-President 1 0 X X 0 0 0 Stephen Peters President-Elect 3 0 X X 0 0 0 Dr Shaun Hussain Secretary 2 0 X X 0 0 0 Timothy Engel Treasurer 2 0 X X 0 0 0 Monique Terrell Ex Officio Child Neurology Society Executive Director Non-voting Member 0.5 0 X 0 0 0 Dr Ann Tilton Ex Officio Honorary Director Non-voting member 2 0 X 0 0 0 Dr Mary Zupanc Ex Officio Honorary Director Non-voting member 2 0 X 0 0 0 Dr W Donald Shields Ex Officio Honorary Director Non-voting member 2 0 X 0 0 0 593670 0 193267 3 0 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 443470 1 0 0 0 0 59013 1110733 0 1169746 Corporate Advisory Board 900099 712500 0 0 712500 Peer Support Program Webinars 611430 15965 15965 0 0 0 0 0 0 728465 -30731 -30731 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Credit card rebate 900099 2000 2000 0 0 0 0 0 0 2000 1869480 -12766 0 712500 X 475375 475375 1000 1000 5000 5000 0 0 645318 80284 477001 88033 0 0 0 0 664680 271913 275529 117238 0 0 0 0 155019 63769 62178 29072 45141 18569 18106 8466 21276 5286 12955 3035 65708 31295 34413 0 15544 0 15544 0 0 0 0 0 12188 12188 0 0 0 0 1027169 889322 112160 25687 1926 175 1751 0 12390 952 9890 1548 260564 223476 26371 10717 0 0 0 0 49661 19054 23219 7388 168662 25102 122645 20915 0 0 0 0 16028 14928 1100 0 1900 0 1900 0 0 0 0 0 8367 0 8367 0 9575 0 9575 0 Bad Debt Expense 25000 0 25000 0 Dues & Subscriptions 776 0 776 0 Present Value Adj on Grants Payable -7571 -7571 0 0 3680696 2117929 1238480 324287 387276 170536 1598955 1063446 1923611 954169 0 5907 0 0 0 0 0 0 0 0 31401 8896 80937 54950 19274 25987 523677 446669 0 0 0 0 0 0 98957 68590 4583151 2744200 270023 290630 299536 391965 235000 158000 0 0 0 0 0 0 0 0 100000 90000 104521 70485 1009080 1001080 X 448077 575013 3125994 1168107 3574071 1743120 4583151 2744200 -1811216 -19735 0 0 0 0 X 0 1 X 1 0 X 1454513 1823166 2984818 2751727 1169746 10183970 0 0 0 0 0 0 0 0 0 0 0 0 1454513 1823166 2984818 2751727 1169746 10183970 4922538 5261432 -9974 29253 16769 17275 -50465 2858 0 0 0 0 0 0 600 0 2250 1750 2000 6600 10193428 728465 0.51616 0.47512 X Schedule A, Part II, Line 10 Miscellaneous Revenue - $2,000 from credit card rewards RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 1 0 1 4129 0 0 1 1032 0 0 5161 0 Schedule C, Part II-B, Line 1 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. To strengthen our advocacy efforts, we conduct comprehensive research and analysis of existing policies related to children with neurological conditions. By studying the current legal and regulatory framework, we identify gaps and areas that require improvement. Our research findings inform our lobbying strategies and enable us to propose evidence-based policy solutions that address the specific needs of the children and families we serve. We actively collaborate with other nonprofits, advocacy organizations, and stakeholders working in the field of children's neurological conditions. Through these partnerships, we amplify our collective voice and advocate for common goals. By joining forces, we enhance our advocacy impact and create a united front in advocating for policy changes that benefit children with neurological conditions and their families. We engage our community members, volunteers, and families affected by neurological conditions to participate in our advocacy efforts. Through targeted campaigns, we raise awareness about the issues faced by children with neurological conditions, encouraging individuals to contact their legislators and voice their support for policies that enhance the well-being and opportunities for these children. We provide resources, toolkits, and guidance to empower our grassroots supporters in advocating effectively. 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 130442 0 -9974 3500 0 1352 115616 0 0.89 0.11 0 0 0 0 0 0 0 0 0 0 0 0 0 21803 0 12191 9612 59134 0 42759 16375 25987 0 Lease Liability - Current 34829 Lease Liability - Longterm 35656 70485 X 1874611 -19734 24865 0 0 5131 1869480 0 0 0 1869480 3705562 24866 0 0 0 24866 3680696 0 0 0 3680696 Schedule D, Part V, Line 4 In 2010, the Society of Neurodevelopment 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 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 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 Infantile Spasms Awareness Week Grant to the UK Infantile Spasms Trust 5000 North America (including Canada and Mexico, but not the United States) 0 1 Program Services Marketing and programming services 5995 0 1 10995 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 (ISAN) 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. 1 Ann and Robert H Lurie Children's Hospital of Chicago 225 E Chicago Avenue Chicago IL 60611 362170833 501c3 175000 0 2023 PERF Grant - $150,000; 2023 Transition of Care Quality Improvement Grant - $25,000 University of Rochester 500 Joseph C Wilson Blvd RC Box 270140 Rochester NY 14627 160743209 501c3 150000 0 2023 PERF Grant - $150,000 National Tuberous Sclerosis Association DBA TSC Alliance 8737 Colesville Road Suite 400 Silver Spring MD 20910 953018799 501c3 41375 0 2022 Infantile Spasms Awareness Network Governance Grant - $36,375; 2022 Infantile Spasms Awareness Week Grant - $5,000 Child Neurology Society 1000 West County Road E Suite 290 St Paul MN 55126 237359775 501c3 31000 0 2022 Unrestricted Symposium Grant - $30,000; Dodge Research Grant Contribution - $1,000 Children's Hospital Corporation DBA Boston Children's Hospital 300 Longwood Avenue Boston MA 02115 042774441 501c3 25000 0 2022 Transition of Care Quality Improvement Grant American Epilepsy Society 135 South LaSalle St Suite 2850 Chicago IL 60603 046112600 501c3 12500 0 2022 Unrestricted Symposium Grant - $10,000; 2022 Parents Against Mortality in Epilepsy (PAME) Grant - $2,500 Dup15q Alliance Inc PO Box 1669 Highland Park IL 60035 200751232 501c3 12000 0 2022 Infantile Spasms Awareness Network Governance Grant - $7,000; 2022 Infantile Spasms Awareness Week Grant - $5,000 14 14 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 . 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. Schedule I, Part II, Line 1 PERF GRANT DESCRIPTION: The Pediatric Epilepsy Research Foundation, PERF, has partnered with the CNF Research Grants Program annually since 2001. Their mission is to enhance the quality of life of children (and their families) with epilepsy and/or other neurologic disorders. PERF supports research primarily in pediatric epilepsy and/or all areas of pediatric neurology research. PERF also supports education and recruitment of young physicians in the field of child neurology. The grants are named PERF Elterman Research Grant and PERF Shields Research Grant; INFANTILE SPASMS AWARENESS WEEK GRANT DESCRIPTION: Two $5,000 grants were given out to participating organizations in the Infantile Spasms Action Network to support projects that increased public awareness of infantile spasms during Infantile Spasms Awareness Week; TRANSITION OF CARE GRANT DESCRIPTION: The Child Neurology Foundation (CNF) expanded our work in Transition of Care by awarding two $25,000 grants to institutions to improve Transition of Care practices. NDD AWARD DESCRIPTION: The Neuro Developmental Disorder (NDD) Research Scholarship is a clinical research scholarship for a first- or second-year US or Canadian medical student who has an interest in training in neurodevelopmental disabilities or child neurology. The award is made for clinical research focused in the field of neurodevelopmental disabilities in children or young adults to be conducted under the direction of a child neurology/NDD subspecialist. SWAIMAN AWARD DESCRIPTION: To honor the legacy of Dr. Swaiman and his contribution to child neurology, the Child Neurology Foundation (CNF) offers the Dr. Kenneth F. Swaiman Medical Student Scholarship thanks to the support of his wife and pediatric neurologist Dr. Phyllis Sher. Administered annually, the $5,000 summer research scholarship was be given to each of three (3) U.S. or Canadian medical students who have an interest in exploring a career in child neurology. Travel expenses of up to $1,000 were provided to attend the annual Child Neurology Society meeting. The award will be open to second or third-year medical students for a basic or clinical research project in child neurology conducted under the direction of a child neurologist. Schedule I, Part III HARNETT GRANT DESCRIPTION: Brendan Harnett Infantile Spasms Family Grant - Founded in 2014 by Dr. 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 2022 to honor Brendan through offering one $1,000 grant to assist families living with infantile spasms. 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 249276 0 50164 0 204 0 65575 0 20364 0 385583 0 74611 0 Greta Wright Chief Operations Officer 172544 0 18500 0 226 0 48354 0 31292 0 270916 0 44456 0 Schedule J, Part I, Line 1a In 2022 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 2022. Schedule J, Part I, Line 4 A former employee holding a senior position received severance pay which is accrued in the Foundation's 2022 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. Due to the reporting requirements of Schedule J, the 2021 bonus paid in 2022 is reflected in part B column ii, and the deferred bonus for 2022 is included in Column C. This results in a double counting of bonus income. Similarly, on Part VII the 2021 bonus paid in 2022 is included in column D, and the deferred bonus for 2022 is 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. Form 990, Part III, Line 2 The Neurology Social Services Network (NSSN) was launched by CNF in 2022 to help patient advocacy organizations refer families to local service organizations to address social determinants of health. Some examples of services for families include access to food shelves, transportation assistance, and housing assistance. The program also tracks the outcomes of those referrals, measures the impact of organizational programs, and collaboratively aggregates data about how patient advocacy organizations are making an impact. Form 990, Part VI, Section A, Line 4 During the fiscal year 2022, Child Neurology Foundation made significant changes to its governing documents. These changes were implemented to enhance the organization's governance structure, ensure compliance with evolving legal and regulatory requirements, and to adapt to the evolving needs of our organization and the communities we serve. 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. It is important to note that these changes do not impact the tax-exempt status of the Child Neurology Foundation. The organization continues to operate exclusively for charitable purposes as defined under section 501(c)(3) of the Internal Revenue Code. BYLAWS AMENDMENTS: The Child Neurology Foundation amended its bylaws to reflect updated language and provisions that align with the organization's current operations and strategic direction. These amendments include updated headquarters address, board meeting requirements, and the addition of the Finance Committee established in 2019. ARTICLES OF INCORPORATION AMENDMENTS: Amendments were made to Child Neurology Foundation's Articles of Incorporation to update the organization's purpose statement, ensuring it accurately reflects its mission and activities. Additionally, clarification was made for allowable advocacy activities, to comply with applicable state and federal laws and regulations. Form 990, Part VI, Section B, Line 11b The Executive Director/CEO, Treasurer, Director of Accounting and Finance, and external counsel 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 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 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 (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 $583,705 in 2022 on contractor/service providers with specialized skills to assist with program management, advocacy, meeting and event facilitation, and marketing. The Foundation also spent $443,470 on a contract with Digital Health Solutions LLC for the development of the Child Health Improvement through Computerized Automation - Child Neurology. Extension filed