2025-11-14T16:32:13-06:00 2024-12-31 HAN GROUP LLC 1020 19TH STREET NW SUITE 800 WASHINGTON DC 20036 990 2024-01-01 455312680 LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC LYSO 7032616220 3702 PENDER DRIVE 170 FAIRFAX VA 22030 UYENSA BEESE TREASURER/OPERATIONS DIRECTOR 7032616220 2025-11-14 1 1 JENNIFER S HAN P00633304 2022937000 2025-11-14 2024 2025-03-06 01:10:19Z DR OZLEM GOKER-ALPAN 3702 PENDER DRIVE 170 FAIRFAX VA 22030 4423059 0 X LYSOSOMALCENTER.ORG X 2012 MD RESEARCH AND UNRAVEL DISEASE CAUSING MECHANISMS AND EXPLORE NEW BIOMARKERS AND TREATMENT OPTIONS. 4 0 26 5 0 0 491100 501823 2860290 3921232 0 4 0 0 3351390 4423059 5000 0 0 0 1694420 1834816 0 0 14550 1977294 1906947 3676714 3741763 -325324 681296 1851613 2422363 960693 1525864 890920 896499 X LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC'S (LDRTC) MISSION IS TO PROVIDE RESEARCH TO UNRAVEL UNDERLYING DISEASE-CAUSING MECHANISMS, DISCOVER NEW BIOMARKERS AND EXPLORE NEW THERAPEUTIC PATHWAYS AND TREATMENT OPTIONS. FURTHER, LDRTC WORKS TO EDUCATE PATIENTS, FAMILIES, HEALTHCARE PROVIDERS AND RESEARCHERS IN THE FIELD. FINALLY, IT PROVIDES TREATMENT AND CLINICAL CARE TO PERSONS SUFFERING FROM LYSOSOMAL AND OTHER RARE DISEASES. 0 0 1492943 3728928 RESEARCH: LDRTC AIMS TO BRIDGE THE GAP BETWEEN BASIC AND CLINICAL RESEARCH TO FACILITATE THE DIAGNOSIS, TREATMENT, AND MANAGEMENT OF RARE DISORDERS. LDRTC PRESENTS A UNIQUE TRANSLATIONAL RESEARCH MODEL FOCUSING ON A MULTIDISCIPLINARY APPROACH TO STUDY THE DISEASE PATHOLOGY, WHILE APPLYING CELLULAR, MOLECULAR, AND IMMUNOLOGIC CONCEPTS TO PATHWAYS AMENABLE TO THERAPEUTIC MODULATION. 1256695 30194 TREATMENT & CLINICAL CARE: IN LDRTC'S CLINIC, LDRTC OFFERS EXTENSIVE MEDICAL GENETIC EVALUATIONS FOR COMPLEX MEDICAL PROBLEMS OF UNKNOWN ETIOLOGY AND THAT DO NOT FIT A PARTICULAR DISEASE PATTERN. CASE STUDIES INVOLVING INDIVIDUALIZED THERAPY, INSTITUTIONAL COLLABORATIONS AND INDIVIDUAL BENCH SCIENCE PROJECTS WERE SUCCESSFUL DURING THE PAST YEAR. 625612 162110 EDUCATION: EDUCATION IS FOCUSED AROUND PATIENT MEETINGS, WORKSHOPS, LECTURE SERIES, CONFERENCES, SYMPOSIUMS AND INTERNSHIPS. LDRTC HOLDS VARIOUS WORKSHOPS DESIGNED TO PROVIDE OPPORTUNITIES FOR ITS ATTENDEES TO COLLABORATE AND PROMOTE DISCUSSIONS ON ALL ASPECTS OF LYSOSOMAL BIOLOGY. 3375250 1 1 0 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 1 37 0 1 26 1 0 0 0 0 0 0 0 0 0 0 0 0 X 4 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 0 0 1 1 0 VA X UYENSA BEESE 7032616220 3702 PENDER DRIVE SUITE 170 FAIRFAX VA 22030 DR OZLEM GOKER-ALPAN PRESIDENT / FOUNDER 40.00 X X 318291 0 9018 LAUREN NOLL DIRECTOR / MANAGER 40.00 X 123056 0 3964 UYENSA BEESE TREASURER / OPERATIONS DIRECTOR 40.00 X X 110124 0 5942 BOBBY SANDHU SECRETARY / LPN 40.00 X X 88413 0 0 MARGARITA IVANOVA DIR. OF TRANSLATIONAL RESEARCH 40.00 X 135796 0 0 775680 0 18924 4 0 1 0 OZLEM GOKER-ALPAN MD LLC 3702 PENDER DRIVE 170 FAIRFAX VA 22030 CLINICAL RESEARCH SERVICES 296496 1 501823 501823 CLINICAL RESEARCH 541700 3607074 3607074 TRANSLATION RESEARCH 541700 246108 246108 PATIENT EDUCATION 611710 49000 49000 CME PROGRAM 900099 19050 19050 3921232 4 4 4423059 3921232 0 4 X 658808 531727 127081 1039366 956173 83193 32796 30833 1963 103846 91113 12733 23799 20881 2918 11160 11160 684113 682148 1965 14651 101 14550 165058 151838 13220 13564 11971 1593 214856 188512 26344 113629 105461 8168 431102 430967 135 53266 53266 14008 12290 1718 32435 28458 3977 CLINICAL SUPPLIES 113671 113671 LICENSE & REGISTRATIONS 11071 9837 1234 BOOKS/SUBS/REFERENCE 6267 5499 768 TAXES 4297 3770 527 3741763 3375250 351963 14550 797835 85473 660398 50000 280393 1376590 12989 246718 200257 99998 46461 0 863839 1851613 2422363 26060 87592 64752 873101 506807 0 928245 960693 1525864 X 890920 896499 890920 896499 1851613 2422363 681296 -9310 -666407 0 X 0 0 0 X 308000 420410 484468 491100 501823 2205801 308000 420410 484468 491100 501823 2205801 1803164 402637 4 4 471 421 892 2206697 13186934 0.18250 0.19070 X I. BACKGROUND:ESTABLISHED IN 2013 BY DR. OZLEM GOKER-ALPAN, THE LYSOSOMAL & RARE DISORDERS RESEARCH & TREATMENT CENTER (LDRTC) STANDS AT THE LEADING EDGE OF CLINICAL RESEARCH FOR LYSOSOMAL DISEASES AND OTHER RARE GENETIC DISORDERS. DR. GOKER-ALPAN, A GLOBALLY RECOGNIZED EXPERT IN THE FIELD OF LYSOSOMAL DISORDERS, BRINGS MORE THAN TWO DECADES OF COMMITTED SERVICE TO HEALTH AND WELLNESS OF PATIENTS WITH RARE DISEASES. OUR CENTER IS DEDICATED TO DELIVERING EXCEPTIONAL CARE AND ADVANCING KNOWLEDGE IN THESE SPECIALIZED AREAS. OUR GOAL AT LDRTC IS TO BE AT THE FOREFRONT FOR UNDERSTANDING AND TREATING LYSOSOMAL AND OTHER RARE DISEASES. WE FOCUS ON UNDERSTANDING DIFFERENT PATHWAYS INVOLVED IN THESE DISORDERS, FINDING NEW WAYS TO ASSESS THEM, AND DEVELOPING BETTER TREATMENTS.II. ANALYSIS:LDRTC QUALIFIES AS A "PUBLICLY SUPPORTED ORGANIZATION DESCRIBED UNDER IRC SECTION 170(B)(1)(A)(VI) AND THEREFORE AS AN ORGANIZATION DESCRIBED IN SECTION 509(A)(1) BECAUSE IT SATISFIES THE "FACTS AND CIRCUMSTANCES TEST" SET FORTH IN SECTION 1170A-9(E)(3) OF THE TREASURY REGULATIONS. A THRESHOLD REQUIREMENTS LDRTC IS ELIGIBLE FOR A DETERMINATION OF PUBLIC SUPPORT UNDER THE FACTS AND CIRCUMSTANCES TEST BECAUSE IT MEETS THE TWO THRESHOLD REQUIREMENTS FOR CONSIDERATION. FIRST, THE PORTION OF LDRTC' SUPPORT THAT QUALIFIES IS ELIGIBLE PUBLIC SUPPORT IN 2024 WAS APPROXIMATELY 18.25%, WHICH EXCEEDS THE 10% THRESHOLD REQUIRED UNDER TREASURY REGULATION SECTION 1170A-9(E)(3)(1). SECOND, LDRTC OPERATIONS ENSURE THAT IT WILL CONTINUE TO ATTRACT NEW AND ADDITIONAL PUBLIC SUPPORT, AS REQUIRED BY TREASURY REGULATION SECTION 1170A-9(E)(3).LDRTC WILL INITIATE FUNDRAISING PROGRAMS TARGETING INDIVIDUALS, PRIVATE FOUNDATIONS, AND FOR-PROFIT CORPORATIONS THAT SHARE ITS MISSION, THEREBY SATISFYING THE OTHER THRESHOLD REQUIREMENT FOR QUALIFYING AS PUBLICLY SUPPORTED UNDER THE FACTS AND CIRCUMSTANCES TEST. LDRTC HAS A DONATE NOW BUTTON ON THEIR WEBSITE, THUS WELCOMING DONATIONS FROM OTHER ORGANIZATIONS. OTHER RELEVANT FACTORS IN DETERMINING WHETHER LDRTC MEETS THE "FACTS AND CIRCUMSTANCES TEST," IS THAT THE TREASURY REGULATIONS ALSO PROVIDE A LIST OF FACTORS THAT SERVE AS AN INDICATION OF WHETHER AN ORGANIZATION QUALIFIES AS "PUBLICLY SUPPORTED." THE HIGHER THE PERCENTAGE OF SUPPORT ABOVE THE 10% REQUIREMENT, THE LOWER THE ORGANIZATION'S BURDEN IN ESTABLISHING ITS PUBLICLY SUPPORTED NATURE WITH OTHER FACTORS. THESE ADDITIONAL FACTORS, DISCUSSED BELOW, PROVIDE FURTHER EVIDENCE THAT LDRTC SATISFIES THE FACTS AND CIRCUMSTANCES TEST. 1) SOURCES OF SUPPORT: LDRTC RECEIVES ITS PUBLIC SUPPORT FROM A WIDE VARIETY OF CONTRIBUTORS AND DOES NOT DEPEND ON A SINGLE FAMILY FOR CONTRIBUTIONS, TWO FACTS THAT PROVIDE FURTHER SUPPORT FOR LDRTC QUALIFICATION AS A "PUBLICLY SUPPORTED" ENTITY. THESE DONORS INCLUDE TAX-EXEMPT ENTITIES AND INDIVIDUAL DONORS. LDRTC PLANS TO CONTINUE REACHING OUT TO NEW DONORS IN THE COMING YEARS. 2) REPRESENTATIVE GOVERNING BODY: THE REPRESENTATIVE NATURE OF AN ORGANIZATION'S GOVERNING BODY IS ALSO A FACTOR IN DETERMINING WHETHER IT QUALIFIES UNDER THE "FACTS AND CIRCUMSTANCES TEST." IN CONSIDERING WHETHER A BOARD IS REPRESENTATIVE, SUCH FACTORS AS THE MEMBERS' EXPERTISE IN THE RELEVANT FIELD, THEIR HISTORY OF LEADERSHIP IN THE COMMUNITY AND THEIR TRADITION OF PUBLIC SERVICE ARE RELEVANT LDRTC BOARD OF DIRECTORS INCLUDES A VARIETY OF INDIVIDUALS WITH EXCEPTIONAL BACKGROUNDS. THE BOARD DIRECTORS IS LOCATED AT FORM 990, PART VII, SECTION A. PARTICIPATION IN PROGRAMS UNDER SECTION 1170A-9(E)(3)(V)(1)(C)(1) OF THE TREASURY REGULATIONS, ONE FACTOR INDICATING THAT AN ORGANIZATION QUALIFIES AS "PUBLICLY SUPPORTED" UNDER THE FACTS AND CIRCUMSTANCES TEST IS THE PARTICIPATION OF "MEMBERS OF THE PUBLIC HAVING SPECIALIZED KNOWLEDGE OR EXPERTISE, PUBLIC OFFICIALS, OR CIVIC OR COMMUNITY LEADERS" IN THE ORGANIZATION'S PROGRAMS OR GOVERNANCE. CONSISTENT WITH THIS REQUIREMENT, ALL MEMBERS OF LDRTC'S BOARD OF DIRECTORS ARE RECOGNIZED EXPERTS AND LEADERS IN THE FIELD OF LYSOSOMAL AND RARE GENETIC DISORDERS, BRINGING SPECIALIZED KNOWLEDGE AND DECADES OF EXPERIENCE TO GUIDE THE ORGANIZATION'S RESEARCH AND PATIENT CARE INITIATIVES.III. CONCLUSION:LDRTC HAS THE CHARACTERISTICS OF A "PUBLICLY SUPPORTED ORGANIZATION, BASED ON THE FACTS AND CIRCUMSTANCES TEST DESCRIBED IN SECTION 1170A-9(E)(3) OF THE TREASURY REGULATIONS SPECIFICALLY, A SMALL NUMBER OF DONORS DO NOT CONTROL LDRTC, RATHER LDRTC IS A GROWING INSTITUTION THAT BEARS MANY OF THE INDICIA OF A "PUBLICLY SUPPORTED ORGANIZATION, INCLUDING PUBLIC SUPPORT FROM A WIDE CROSS-SECTION OF DONORS, WITH A REPRESENTATIVE GOVERNING BODY. MOREOVER, LDRTC IS CONTINUING TO SEEK NEW SOURCES OF SUPPORT FROM THE GENERAL PUBLIC AS WELL AS OTHER ORGANIZATIONS ACCORDINGLY, LDRTC QUALIFIES AS A "PUBLICLY SUPPORTED ORGANIZATION DESCRIBED IN SECTION 170(B)(1)(A)(VI). SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2020 AMOUNT: $ 471. 2021 AMOUNT: $ 421. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 15650 15650 0 231068 184607 46461 46461 RIGHT-OF-USE ASSET - OPERATING LEASE 852841 SECURITY DEPOSITS 10998 863839 OPERATING LEASE LIABILITY 928245 928245 X X 0 0 0 0 0 0 0 0 0 DR OZLEM GOKER-ALPAN PRESIDENT / FOUNDER 318291 0 0 0 0 0 0 0 9018 0 327309 0 0 0 DR OZLEM GOKER-ALPAN MD LLC FOUNDER/PRESIDENT 296496 LDRTC WAS PROVIDED WITH CLINICAL RESEARCH SERVICES BY DR. OZLEM GOKER-ALPAN, MD, LLC. DR. OZLEM GOKER-ALPAN IS THE OWNER OF THE MEDICAL PRACTICE. 0 FORM 990, PART VI, SECTION A, LINE 8B THERE ARE NO COMMITTEES THAT CAN ACT ON BEHALF OF THE GOVERNING BODY. FORM 990, PART VI, SECTION B, LINE 11B THE DRAFT VERSION OF THE FEDERAL FORM 990 IS REVIEWED BY THE FULL BOARD OF DIRECTORS PRIOR TO FILING WITH THE INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C IN CONNECTION WITH ANY ACTUAL OR POSSIBLE CONFLICTS OF INTEREST, AN OFFICER, DIRECTOR, OR EMPLOYEE MUST DISCLOSE THE EXISTENCE OF HIS OR HER FINANCIAL INTERESTS IN THE ORGANIZATION, INCLUDING BUSINESS AND FAMILY RELATIONSHIPS IN THE ORGANIZATION. EACH OFFICER, DIRECTOR OF EMPLOYEE IS REQUIRED TO COMPLETE A CONFLICT OF INTEREST DISCLOSURE QUESTIONNAIRE ON AN ANNUAL BASIS. ANY POSSIBLE DISCLOSED FINANCIAL INTEREST, OR BUSINESS AND FAMILY RELATIONSHIPS, IS REVIEWED BY THE LDRTC PRESIDENT TO DETERMINE IF A CONFLICT OF INTEREST EXISTS. (NOTE THAT A FINANCIAL INTEREST OR BUSINESS AND FAMILY RELATIONSHIP DOES NOT NECESSARILY CONSTITUTE A CONFLICT OF INTEREST.) IF THE PERSON DISCLOSING THE FINANCIAL INTEREST OR EXISTING BUSINESS AND FAMILY RELATIONSHIPS IS A CURRENT MEMBER OF THE BOARD OF DIRECTORS, SAID MEMBER SHALL LEAVE THE MEETING ROOM DURING THE DISCUSSION OF, AND THE VOTE ON, WHETHER A CONFLICT OF INTEREST EXISTS. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS ESTABLISHES PERFORMANCE METRICS FOR THE PRESIDENT. FOLLOWING THE CLOSE OF THE YEAR, THE BOARD OF DIRECTORS REVIEWS THE RESULT TO DETERMINE THE OVERALL LEVEL OF PERFORMANCE. A THIRD-PARTY COMPENSATION CONSULTANT IS ENGAGED TO REVIEW MARKET COMPENSATION FOR THE PRESIDENT AND KEY MANAGEMENT EMPLOYEES. THE BOARD OF DIRECTORS PROPOSES CHANGES IN COMPENSATION FOR THE PRESIDENT BASED ON PERFORMANCE OUTCOMES. ANY INCREASES IN COMPENSATION FOR KEY MANAGEMENT STAFF ARE PROPOSED BY THE PRESIDENT AND APPROVED BY THE BOARD OF DIRECTORS. THE LAST TIME A COMPENSATION STUDY WAS COMPLETED FOR THE PRESIDENT WAS DURING THE 3RD QUARTER OF 2023. FORM 990, PART VI, SECTION C, LINE 19 ALL GOVERNING DOCUMENTS AND COPIES OF POLICIES ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G RESEARCH SERVICES: PROGRAM SERVICE EXPENSES 600,285. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 600,285. CONSULTANT SERVICES: PROGRAM SERVICE EXPENSES 48,896. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 48,896. CME PROGRAM: PROGRAM SERVICE EXPENSES 12,311. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 12,311. PAYROLL EXPENSES: PROGRAM SERVICE EXPENSES 7,925. MANAGEMENT AND GENERAL EXPENSES 1,108. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 9,033. PATIENT EDUCATION: PROGRAM SERVICE EXPENSES 6,594. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 6,594. 401K PLAN FEE: PROGRAM SERVICE EXPENSES 2,577. MANAGEMENT AND GENERAL EXPENSES 360. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 2,937. EMPLOYEE RECRUITING: PROGRAM SERVICE EXPENSES 2,323. MANAGEMENT AND GENERAL EXPENSES 325. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 2,648. CONTINUING EDUCATION: PROGRAM SERVICE EXPENSES 1,237. MANAGEMENT AND GENERAL EXPENSES 172. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,409.