2025-07-21T08:58:24-05:00 2024-12-31 995084472 MRM TAX AND CONSULTING LLC 3001 DALLAS PKWY SUITE 750 FRISCO TX 75034 990 2024-01-01 463208388 KOOLEN-DE VRIES SYNDROME FOUNDATION KOOL 8337315387 609A PINER ROAD 319 WILMINGTON NC 28409 GABRIEL STAGNER TREASURER 8337315387 2025-07-10 1 1 ABRIELLE F ARNOLD CPA P02147595 2149690400 2024 2025-03-06 01:10:19Z GABRIEL STAGNER 609A PINER ROAD SUITE 319 WILMINGTON NC 28409 263173 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 260020 262702 45594 38 7 433 0 0 305621 263173 159372 204254 0 0 0 0 0 0 5695 165192 66016 324564 270270 -18943 -7097 580616 573519 0 0 580616 573519 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 231701 204254 0 PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY. 0 0 38 PROVIDING PATIENT ADVOCACY SUMMITS AND SOCIAL GATHERING EVENTS FOR THE KDVS COMMUNITY AND INTERESTED MEDICAL PROFESSIONALS. 17117 0 0 INCREASING AWARENESS OF KDVS IN BOTH THE GENERAL POPULATION AND MEDICAL PROFESSION. 248818 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 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 VA X GABRIEL STAGNER 8337315387 609A PINER ROAD SUITE 319 WILMINGTON NC 28409 X ALAYNA HAYNAM BOARD MEMBER 1.00 X 0 0 0 ASHLEY POINT PRESIDENT 10.00 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 5.00 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 MEGAN HARTWELL BOARD MEMBER 2.00 X 0 0 0 0 0 0 0 0 0 0 0 262702 262702 SUMMIT REGISTRATION FE 813212 38 38 38 433 433 263173 38 0 433 X 44500 44500 159754 159754 9000 9000 27447 27447 10163 5082 5081 5124 5124 1559 1559 DUES & SUBSCRIPTIONS 4604 3453 1151 LICENSE & FEES 2672 2672 WEBSITE 2458 1229 615 614 BANK CHARGES & FEES 1967 1475 492 1022 754 268 270270 248818 15757 5695 506184 338786 74432 224865 0 9868 580616 573519 0 0 X 374997 421142 205619 152377 580616 573519 580616 573519 -7097 0 X 1 X 0 0 0 X 153968 252201 237458 260020 262702 1166349 153968 252201 237458 260020 262702 1166349 328372 837977 11 12 7 7 433 470 1166819 51442 0.71820 0.77590 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM GRANTS TO RECIPIENTS THAT EXCEEDED $10,000 IN AGGREGATE 119466 EAST ASIA AND THE PACIFIC GRANTS TO RECIPIENTS THAT EXCEEDED $10,000 IN AGGREGATE 40288 0 0 0 0 0 0 159754 0 159754 EAST ASIA AND THE PACIFIC PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY. 40288 0 EUROPE (INCLUDING ICELAND & GREENLAND) PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY. 50000 0 EUROPE (INCLUDING ICELAND & GREENLAND) PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY. 49367 0 EUROPE (INCLUDING ICELAND & GREENLAND) PROMOTING RESEARCH OF KDVS IN FIELDS INCLUDING CLINICAL, DRUG THERAPY, SPEECH THERAPY, AND EPILEPSY. 20099 0 3 4 0 0 0 0 0 0 1 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 24500 0 TO PROMOTE THE CLINICAL RESEARCH OF KOOLEN DE VRIES SYNDROME 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. FORM 990, PART IX, LINE 11G RESEARCH: PROGRAM SERVICE EXPENSES 27,447. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 27,447.