2024-08-30T16:15:36-05:00 2023-12-31 751324020 MCCARTHY ROSE & MILLS LLP 3001 DALLAS PKWY SUITE 750 FRISCO TX 75034 990 2023-01-01 463208388 KOOLEN-DE VRIES SYNDROME FOUNDATION KOOL 8337315387 609A PINER ROAD 319 WILMINGTON NC 28409 GABRIEL STAGNER TREASURER 8337315387 2024-08-28 1 1 ABRIELLE F ARNOLD CPA P02147595 2149690400 2023 2024-08-08 14:25:15Z GABRIEL STAGNER 609A PINER ROAD SUITE 319 WILMINGTON NC 28409 305621 0 X KDVSFOUNDATION.ORG X 2013 MO THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT (CONTINUED ON SCHEDULE O) SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INCLUDE SOCIAL GATHERINGS, PATIENT ADVOCACY SUMMITS, SUPPORTING RESEARCH, AND PROVIDING INFORMATION REGARDING KDVS TO BOTH THE GENERAL POPULATION AND MEDICAL PROFESSIONALS. 11 11 0 0 0 0 237458 260020 0 45594 7 7 0 0 237465 305621 0 159372 0 0 0 0 0 0 8285 41563 165192 41563 324564 195902 -18943 599559 580616 0 0 599559 580616 X THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INCLUDE SOCIAL (CONTINUED ON SCHEDULE O) GATHERINGS, PATIENT ADVOCACY SUMMITS, SUPPORTING RESEARCH, AND PROVIDING INFORMATION REGARDING KDVS TO BOTH THE GENERAL POPULATION AND MEDICAL PROFESSIONALS. 0 0 170856 159372 0 PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY. 107158 0 45594 PROVIDING PATIENT ADVOCACY SUMMITS AND SOCIAL GATHERING EVENTS FOR THE KDVS COMMUNITY AND INTERESTED MEDICAL PROFESSIONALS. 18403 0 0 INCREASING AWARENESS OF KDVS IN BOTH THE GENERAL POPULATION AND MEDICAL PROFESSION. 296417 1 1 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 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 11 11 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 0 0 0 CA FL GA MI MN NJ NY NC TN UT VA X GABRIEL STAGNER 8337315387 609A PINER ROAD SUITE 319 WILMINGTON NC 28409 X ALAYNA HAYNAM VICE-PRESIDENT 5.00 X X 0 0 0 ASHLEY POINT PRESIDENT 5.00 X X 0 0 0 CINDY ASBURY BOARD MEMBER 1.00 X 0 0 0 EMILY LEMKE BOARD MEMBER 2.00 X 0 0 0 GABRIEL STAGNER TREASURER 5.00 X X 0 0 0 JESSICA COLLIER BOARD MEMBER 2.00 X 0 0 0 KACI FISHER BOARD MEMBER 5.00 X 0 0 0 NEAL DERMERER BOARD MEMBER 1.00 X 0 0 0 MARIA LUISA VALENTIN DE SOLIS BOARD MEMBER 1.00 X 0 0 0 KATIE MAHER BOARD MEMBER 2.00 X 0 0 0 MATT HOLCOMBE BOARD MEMBER 1.00 X 0 0 0 0 0 0 0 0 0 0 0 260020 260020 SUMMIT REGISTRATION FE 813212 45594 45594 45594 7 7 305621 45594 0 7 159372 159372 8526 8526 11484 11484 14294 7147 7147 2881 2881 107158 107158 1073 1073 LICENSES & FEES 6821 6821 WEBSITE 4552 2276 1138 1138 DUES & SUBSCRIPTIONS 4440 3330 1110 BANK CHARGES & FEES 2542 1906 636 1421 863 558 324564 296417 19862 8285 524928 506184 74425 74432 206 0 599559 580616 0 0 X 304728 374997 294831 205619 599559 580616 599559 580616 -18943 0 X 1 X 0 0 0 X 198616 153968 252201 237458 260020 1102263 198616 153968 252201 237458 260020 1102263 247005 855258 10 11 12 7 7 47 1102310 51404 0.77590 0.80920 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 EMORY UNIVERSITY 1762 CLIFTON RD SUITE 1400 ATLANTA GA 30322 580566256 57500 0 TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME ST JUDE 262 DANNY THOMAS PLACE MEMPHIS TN 38105 620646012 20000 0 TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME CURE EPILEPSY 420 N WABASH AVE SUITE 650 CHICAGO IL 60611 364253176 29500 0 TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME UNIVERSITY OF CALIFORNIA SAN FRANCISCO PO BOX 45339 SAN FRANCISCO CA 94145 942829914 52372 0 TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME 4 PART I, LINE 2: THE FOUNDATION'S PROCEDURES FOR MONITORING THE USE OF GRANT FUNDS IS PRIMARILY FACILITATED THROUGH ITS MEDICAL ADVISORY BOARD (MAB), A COMMITTEE OF THE BOARD OF DIRECTORS (BOD). THE MAB MEETS PERIODICALLY TO MONITOR THE PROGRESS AND EFFICACY OF NEW AND ONGOING RESEARCH PROJECTS. THE MAB CONSISTS OF INDIVIDUALS WITH RELEVANT EXPERTISE SUCH AS DOCTORS AND MEDICAL SCIENTISTS. FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION'S FINANCIAL STATEMENTS AND OTHER POLICIES ARE MADE AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART VI, SECTION B, LINE 12C EACH DIRECTOR, PRINCIPAL OFFICER OR EMPLOYEE AND COMMITTEE MEMBER SHALL ANNUALLY SIGN A STATEMENT THAT AFFIRMS SUCH PERSON: A. HAS RECEIVED A COPY OF THE CONFLICT OF INTEREST POLICY; B. HAS READ AND UNDERSTANDS THE CONFLICT OF INTEREST POLICY; C. HAS AGREED TO COMPLY WITH THE CONFLICT OF INTEREST POLICY; AND D. UNDERSTANDS THAT THE FOUNDATION IS CHARITABLE, AND, IN ORDER TO MAINTAIN ITS FEDERAL TAX-EXEMPTION, IT MUST ENGAGE PRIMARILY IN ACTIVITIES THAT ACCOMPLISH ONE OR MORE OF ITS TAX-EXEMPT PURPOSES. FORM 990, PART VI, SECTION B, LINE 15 CURRENTLY, THERE ARE NO OFFICERS OR BOARD MEMBERS WHO ARE COMPENSATED BY THE FOUNDATION. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION'S FINANCIAL STATEMENTS AND OTHER POLICIES ARE MADE AVAILABLE TO THE PUBLIC UPON REQUEST.