2024-11-12T07:17:37-06:00 2023-12-31 251638525 GROSSMAN YANAK & FORD LLP 444 LIBERTY AVENUE SUITE 500 PITTSBURGH PA 15222 990 2023-01-01 471094057 THE RYR-1 FOUNDATION RYR- 4122237236 PO BOX 13312 PITTSBURGH PA 15243 MICHAEL GOLDBERG BOARD PRESIDENT 4122237236 2024-11-11 1 1 RICHARD E DYNOSKE P00095538 4123389300 2024-11-08 2023 2024-10-15 13:58:12Z MICHAEL GOLDBERG PO BOX 13312 PITTSBURGH PA 15243 600451 0 X WWW.RYR1.ORG X 2014 PA THE MISSION OF THE RYR-1 FOUNDATION IS TO SUPPORT RESEARCH LEADING TO AN EFFECTIVE TREATMENT OR A CURE FOR RYR-1-RELATED DISEASES THROUGH SUPPORTING RESEARCH, PHYSICIAN EDUCATION, AND PATIENT & FAMILY SUPPORT AND ADVOCACY. 12 9 5 2 0 0 320129 522621 66606 0 24062 71970 315 5860 411112 600451 186313 170863 0 0 82470 113787 0 0 14201 267445 69386 536228 354036 -125116 246415 2065543 2372994 3667 5114 2061876 2367880 THE MISSION OF THE RYR-1 FOUNDATION IS TO SUPPORT RESEARCH LEADING TO AN EFFECTIVE TREATMENT OR A CURE FOR RYR-1-RELATED DISEASES THROUGH SUPPORTING RESEARCH, PROVIDING MEDICAL PROFESSIONAL EDUCATION, AND PATIENT & FAMILY SUPPORT AND ADVOCACY. 0 0 173355 170863 RESEARCH GRANTS - THE FOUNDATION MAKES GRANTS TO RESEARCHERS INTERESTED IN RYR-1-RELATED DISEASES (RYR-1-RD). AS THE ONLY ORGANIZATION SOLELY DEDICATED TO RYR-1-RD, WE PROMOTE RESEARCH IN THIS AREA. 11307 SCIENTIFIC ADVISORY BOARD - THE SCIENTIFC ADVISORY BOARD IS A GROUP OF THE WORLD'S LEADING AUTHORITIES IN RYR-1 RELATED DISEASES. THE SAB DETERMINES THE RESEARCH PRIORITIES OF THE RYR-1 FOUNDATION. 1041 RESEARCH WORKSHOP - THE PATIENT-LED INTERNATIONAL RESEARCH WORKSHOP IS DEVOTED EXCLUSIVELY TO RYR-1-RELATED DISEASES. THIS WORKSHOP PROVIDE A MUCH-NEEDED FORUM FOR THE LEADING INTERNATIONAL RYR-1-RD EXPERTS AND A GROUP OF AFFECTED INDIVIDUALS TO SHARE KNOWLEDGE, EXCHANGE IDEAS, FORM COLLABORATIONS, AND DEVELOP NEW STRATEGIES FOR FINDING THERAPIES. THE WORKSHOP ORGANIZING COMMITTEE INCLUDES A DIVERSE GROUP OF RESEARCHERS/CLINICIANS IN RYR-1-RD, MEMBERS OF THE RYR-1 FOUNDATION'S SAB, AND RYR-1-RD COMMUNITY REPRESENTATIVES. 26597 26597 212300 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 1 1 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 1 0 1 5 1 0 0 0 0 0 0 0 0 0 0 X 12 9 1 0 1 0 0 0 0 1 1 0 0 0 1 1 1 1 0 1 1 0 PA X X X LINDSAY GOLDBERG BUSINESS MANAGER & PATIENT LIAISON 5178969116 939 VALLEYVIEW ROAD PITTSBURGH PA 15243 MICHAEL GOLDBERG BOARD PRESIDENT 5.00 X X 0 0 0 MORTON GOLDBERG BOARD VICE PRESIDENT 5.00 X X 0 0 0 ANDREW HUSETH SECRETARY 3.00 X X 0 0 0 RANDOLPH PEPPER TREASURER 5.00 X X 0 0 0 MICHAEL LEGUM ASSISTANT TREASURER 3.00 X X 0 0 0 MYRNA GOLDBERG DIRECTOR, RETIRED AS OF AUGUST 2023 1.00 X 0 0 0 JENNIFER RYAN DIRECTOR 1.00 X 0 0 0 EMILY PEDERSEN DIRECTOR 1.00 X 0 0 0 DONALD ZACK DIRECTOR 1.00 X 0 0 0 JUSTIN MCARTHUR DIRECTOR 1.00 X 0 0 0 BRYAN HEFT DIRECTOR 1.00 X 0 0 0 ROBERT HANICH DIRECTOR 1.00 X 0 0 0 JOHN GALLO EXECUTIVE DIRECTOR 40.00 X 41150 0 0 LINDSAY GOLDBERG BUSINESS MANAGER 13.00 X 21835 0 0 62985 0 0 0 0 0 0 0 522621 5000 522621 71970 71970 MISCELLANEOUS INCOME 900099 5860 5860 5860 600451 5860 0 71970 18863 18863 152000 152000 102202 14011 79658 8533 2749 2749 8836 1414 6715 707 2963 1728 1235 12010 12010 382 261 121 2745 457 1375 913 5216 80 4276 860 2442 2442 13166 13166 HONORARIUMS 6500 6500 SPONSORSHIPS 5571 5571 OTHER PROGRAM EXPENSES 5392 5385 7 EDUCATION 3283 1114 2169 9716 4202 3561 1953 354036 212300 127535 14201 269807 335965 111753 0 35000 0 6500 1648983 2030529 2065543 2372994 233 706 3434 4408 3667 5114 X 1437902 1845636 623974 522244 2061876 2367880 2065543 2372994 246415 59589 0 X X 0 1 X 1 0 X 664541 339653 360585 320129 522621 2207529 664541 339653 360585 320129 522621 2207529 764473 1443056 24649 12659 2320 24062 71970 135660 53715 10089 8974 315 5860 78953 2422142 0.59580 0.57210 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 ACCRUED SALARIES AND WITHHOLDINGS 4408 4408 X 660040 59589 59589 600451 0 600451 354036 0 354036 0 354036 PART X, LINE 2: MANAGEMENT BELIEVES THERE IS NO LIABILITY RELATED TO UNCERTAIN TAX POSITIONS AT DECEMBER 31, 2023 OR 2022. THE ORGANIZATION IS NO LONGER SUBJECT TO TAX EXAMINATIONS FOR THE YEARS BEFORE DECEMBER 31, 2022. 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES GRANTS TO RECIPIENTS LOCATED IN REGION;LISTTOTAL 79500 22500 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM GRANTS TO RECIPIENTS LOCATED IN REGION 79500 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, GRANTS TO RECIPIENTS LOCATED IN REGION 50000 0 0 0 0 0 0 152000 0 152000 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, RESEARCH 50000 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH 22500 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 34500 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH 50000 0 0 0 0 0 0 0 1 INGENIOUS TARGETING LABORATORY 2200 SMITHTOWN AVENUE RONKONKOMA NY 11779 18863 0 RESEARCH FORM 990, PART VI, SECTION A, LINE 2 MICHAEL GOLDBERG IS BOARD PRESIDENT & A DIRECTOR OF THE RYR-1 FOUNDATION. HE IS MARRIED TO LINDSAY GOLDBERG AND IS THE SON OF MYRNA AND MORTON GOLDBERG. LINDSAY GOLDBERG IS THE BUSINESS MANAGER AND PATIENT LIAISON OF THE RYR-1 FOUNDATION. SHE IS MARRIED TO MICHAEL GOLDBERG AND IS THE DAUGHTER-IN-LAW OF MYRNA AND MORTON GOLDBERG. MORTON GOLDBERG IS BOARD VICE PRESIDENT AND A DIRECTOR OF THE RYR-1 FOUNDATION. HE IS THE FATHER OF MICHAEL GOLDBERG, HUSBAND OF MYRNA GOLDBERG, AND FATHER-IN-LAW OF LINDSAY GOLDBERG. MYRNA GOLDBERG IS A DIRECTOR OF THE RYR-1 FOUNDATION. SHE IS THE MOTHER OF MICHAEL GOLDBERG, WIFE OF MORTON GOLDBERG, AND MOTHER-IN-LAW OF LINDSAY GOLDBERG. FORM 990, PART VI, SECTION A, LINE 4 EMPLOYEE POLICY MANUAL AND FINANCIAL CONTROLS WERE UPDATED ONCE AN ED WAS HIRED. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 IS REVIEWED BY THE TREASURER PRIOR TO FILING. FORM 990, PART VI, SECTION B, LINE 12C THE BOARD OF DIRECTORS, SCIENTIFIC ADVISORY BOARD MEMBERS, & STAFF FILL OUT A CONFLICT OF INTEREST POLICY ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 ALL EMPLOYEES (EXECUTIVE DIRECTOR, BUSINESS MANAGER & PATIENT LIAISON, PROGRAM MANAGER, PROGRAM & MARKETING DIRECTOR, & ADMINISTRATIVE ASSISTANT) SALARIES AND HOURLY PAY ARE DETERMINED AFTER A REVIEW OF PUBLISHED SALARY DATA FROM COMPARABLE ORGANIZATIONS AND WITH INPUT FROM AND APPROVAL BY THE BOARD OF DIRECTORS. THE BUSINESS MANAGER & PATIENT LIAISON PAY WAS DETERMINED BY THE BOARD OF DIRECTORS WHO DO NOT HAVE A FAMILIAL RELATIONSHIP WITH THIS INDIVIDUAL. DIRECTORS WHO ARE RELATED TO THIS INDIVIDUAL WERE RECUSED FROM DELIBERATIONS AND APPROVAL OF THIS PERSON'S COMPENSATION. FORM 990, PART VI, SECTION C, LINE 19 ALL DOCUMENTS ARE AVAILABLE ON THE RYR-1 FOUNDATION WEBSITE, UPON REQUEST BY CONTACTING THE ORGANIZATION DIRECTLY AND ARE ALSO AVAILABLE ON CANDID/GUIDESTAR'S WEBSITE. FORM 990, PART XII, LINE 2C: THE TREASURER AND EXECUTIVE DIRECTOR ASSUME RESPONSIBILITY FOR THE OVERSIGHT OF THE AUDIT.