2022-06-07T11:58:51-07:00 2021-12-31 990 2021-01-01 411984675 CHILD NEUROLOGY EDUCATION AND RESEARCH FOUNDATION CHIL 8884173435 PO Box 1226 Lexington KY 40588 Amy Brin Executive Director 2147897316 2022-06-07 1 11 1 AAL2 X 2021 2022-09-23 18:48:47Z X Amy Brin 601 W Short Street Lexington KY 40508 3554448 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. 15 15 11 43 0 0 2984818 2930859 555000 608908 16769 13506 2250 1175 3558837 3554448 501186 332203 0 0 917890 1351864 120000 52500 264326 1270996 1453565 2810072 3190132 748765 364316 3990213 4583151 784228 1009080 3205985 3574071 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 216454 203500 0 RESEARCH GRANTS: Since 2001, CNF has proudly awarded over 50 grants and scholarships totaling $4.3M to child neurologists, medical students and researchers who are working on treatments and cures for pediatric neurologic diseases. To encourage collaboration and increase research, the Foundation awarded a $100,000 Pediatric Epilepsy Research Foundation (PERF) Elterman and a $100,000 PERF Shields Research Grant 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 in 2021. To further support interest in the field of child neurology, the Foundation also awarded 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. 1873087 129000 0 COMMUNITY SUPPORT AND EDUCATION: Through CNF's collaborative, multi-stakeholder process, various community support efforts were offered including patient/caregiver educational programming, clinical education, peer support, digital resource support, and advocate training. In 2021, CNF provided 100 families with Chromebooks and hotspots to better access telehealth, provided emotional support to over 140 families with 57 different diagnoses, reached over 700 clinicians with education, provided 25 families with free genetic testing, and created over 50 new educational assets. Program topics included peer support, digital access, telehealth, Infantile Spams Action Network, Transition of Care, and Shortening the Diagnostic Odyssey. 0 0 0 2089541 1 1 0 0 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 1 1 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 18 0 11 1 0 0 0 0 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 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 Director of Finance 8884173435 PO Box 1226 Lexington KY 40588 X X Amy Brin Executive Director Non-voting Member 40 0 X 208848 0 93667 Greta Wright Chief Operations Officer Non-voting Member 40 0 X 161847 0 68031 Loren Wood VP Marketing Non-voting Member 40 0 X 103847 0 9080 Dr Anup Patel President 7 0 X X 0 0 0 Dr Scott Pomeroy Past-President 2 0 X X 0 0 0 Stephen Peters President-Elect 6 0 X X 0 0 0 Dr Shaun Hussain Secretary 1 0 X X 0 0 0 Timothy Engel Treasurer 1 0 X X 0 0 0 Dr Amaris Sanchez-Larragoity Director 1 0 X 0 0 0 Dr Carol MacMillan Director 1 0 X 0 0 0 Dr Donald Pearl Director 1 0 X 0 0 0 Dr John Millichap Director 2 0 X 0 0 0 Julie Gilbert Director 5 0 X 0 0 0 Dr M Scott Perry 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 Phillip Pearl Ex Officio Child Neurology Society Past-President 0.5 0 X 0 0 0 Dr Bruce Cohen Ex Officio Child Neurology Society President 4 0 X 0 0 0 Dr Ann Tilton Non-voting Honorary Director 1 0 X 0 0 0 Dr Mary Zupanc Non-voting Honorary Director 4 0 X 0 0 0 Dr W Donald Shields Non-voting Honorary Director 1 0 X 0 0 0 Roger Larson Non-voting Ex Officio Child Neurology Society Executive Director 0.2 0 X 0 0 0 474542 0 170778 3 0 1 0 Digital Health Solutions LLC 124 E Northfield Dr Suite F No 140 Brownsburg IN 46122 Development of Child Health Improvement through Computer Automation system for child neurology 591293 Cyndi Wright 3045 Atwater Dr Burlingame CA 94010 Project and Event Management 105468 2 0 0 0 0 179131 2751728 0 2930859 Corporate Advisory Board 900099 608333 608333 0 0 Peer Support Program Webinars 611430 575 575 0 0 0 0 0 0 608908 13506 13506 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Credit card rebate 900099 1175 1175 0 0 0 0 0 0 1175 3554448 623589 0 0 X 321203 321203 11000 11000 0 0 0 0 645320 297901 285251 62168 0 0 0 0 411180 189680 181916 39584 0 0 0 0 224152 103476 99082 21594 71212 32874 31478 6860 31870 17616 11117 3137 46164 3438 42726 0 40184 0 40184 0 0 0 0 0 52500 52500 0 0 0 0 1106007 982489 62429 61089 8919 301 8607 11 13684 5869 6190 1625 103414 82973 15676 4765 0 0 0 0 40494 23261 14458 2775 20831 7055 6058 7718 0 0 0 0 11015 9870 1145 0 2500 0 2500 0 0 0 0 0 17436 0 17436 0 8148 0 8148 0 Dues and subscriptions 2899 535 1864 500 3190132 2089541 836265 264326 368128 387276 1951323 1598955 1481577 1923611 0 0 0 0 0 0 0 0 0 0 18525 31401 65857 46583 36709 19274 0 523677 0 0 0 0 0 98957 133951 3990213 4583151 204395 270023 299833 299536 280000 235000 0 0 0 0 0 0 0 0 0 100000 0 104521 784228 1009080 X 363712 448077 2842273 3125994 3205985 3574071 3990213 4583151 364316 3770 0 0 0 0 X 0 1 X 1 0 X 740999 1454513 1823166 2984818 2751727 9755223 0 0 0 0 0 0 0 0 0 0 0 0 740999 1454513 1823166 2984818 2751727 9755223 5081767 4673456 17224 -9974 29253 16769 17275 70547 0 0 0 0 0 0 6050 600 0 2250 1750 10650 9836420 0 0.47512 0.3818 X Schedule A, Part II, Line 10 Miscellaneous Revenue RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 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 116649 0 17224 3431 0 0 130442 0 0.746 0.254 0 0 0 0 0 0 0 0 0 0 0 0 0 21803 0 8847 12956 44054 0 37736 6318 19274 0 Lease Liability - Current 34035 Lease Liability - Longterm 70486 104521 X 3558217 3769 0 0 0 3769 3554448 0 0 0 3554448 3190132 0 0 0 0 0 3190132 0 0 0 3190132 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. 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 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. North America (including Canada and Mexico, but not the United States) 0 1 Program Services Marketing and program services 63098 0 1 63098 0 0 0 0 0 0 Schedule F, Part I, Line 3 Canada: Marketing and program services X X X X X X X 1 Burton Strategies Inc 2920 Neilson Way Suite 501 Santa Monica CA 90405 Strategic development plan with building a major donor base 0 0 47500 -47500 0 47500 -47500 AK AL AR AZ CA CO CT DC DE FL GA HI IA ID IL IN KS KY LA MA MD ME MI MN MO MS MT NC ND NE NH NJ NM NV NY OH OK OR PA RI SC SD TN TX UT VA VT WA WI WV WY 1 Regents of the University of California Awardee Autumn Ivy MD PhD 160 Aldrich Hall Irvine CA 92697 952226406 501c3 100000 2021 PERF Elterman Research Grant Children's Research Institute Awardee Nathan Cohen MD 111 Michigan Avenue NW Washington DC 20010 521654453 501c3 100000 2022 PERF Shields Research Grant Tuberous Sclerosis Alliance 8737 Colesville Road Suite 400 Silver Spring MD 20910 953018799 501c3 32000 Infantile Spasms Awareness Week Child Neurology Society 1000 West Co Road E Suite 290 St Paul MN 55126 237359775 501c3 30000 2021 Unrestricted Symposium Grant LGS Foundation 80 Orville Dr Suite 100 Bohemia NY 11716 262051377 501c3 19000 Infantile Spasms Awareness Week American Epilepsy Society 135 South LaSalle St Suite 2850 Chicago IL 60603 046112600 501c3 10000 $5,000 2021 Parents Against Mortality in Epilepsy (PAME) Grant; $5,000 2021 Sudden Unexpected Death in Epilepsy (SUDEP) Awareness & Behavior Change Grant Dup15q Alliance Inc PO Box 1669 Highland Park IL 60035 200751232 501c3 7000 Infantile Spasms Awareness Week 7 7 2021 Rise Grants - to support families living with Neurologic Diagnosis, 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 such items as: durable medical equipment, assistive technology, therapy services, respite care, etc. 10 10000 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 2021 to honor Brendan through offering one $1,000 grant to assist families living with infantile spasms. 1 1000 Neuro Development Disorder Research Scholarship 1 3500 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 are 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 1 1 X X X X 0 0 0 0 0 0 0 0 0 Amy Brin Executive Director Non-voting Member 194739 0 19294 0 15001 0 74611 0 19056 0 322701 0 19294 0 Greta Wright Chief Operations Officer Non-voting Member 153761 0 10500 0 1481 0 44456 0 23575 0 233773 0 10500 0 Schedule J, Part I, Line 1a In 2021 the Foundation provided all employees with a taxable self-care stipend of $250 per quarter. Receipts were required to submit reimbursement, but employees had the discretion of selecting what they would purchase for their self-care needs. Schedule J, Part I, Line 3 Child Neurology Foundation contracted with TriNet, a cloud-based professional employer organization (PEO), and all employees of CNF are co-employees with TriNet. 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 in 2021. Other key employees have compensation established using compensation surveys. Form 990, Part VI, Section B, Line 11b The Executive Director/CEO, COO, 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. 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 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 2021. 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 on the website. Form 990, Part VII, Section B, Line 1(B) Digital Health Solutions LLC: Development of Child Health Improvement through Computer Automation system for child neurology Cyndi Wright: Project and Event Management Form 990, Part IX, Line 11g The Child Neurology Foundation spent $515K in 2021 on contractor/service providers with specialized skills to assist with payroll/HR, advocacy, program management, event facilitation, recruitment, donor database support, and marketing. The Foundation also granted $591K to Digital Health Solutions LLC related to the development of the Child Health Improvement through Computer Automation - Child Neurology.