2024-05-09T11:08:28-04:00 2023-09-30 990 2022-10-01 330712327 NBIA DISORDERS ASSOCIATION % AMBER DENTON NBIA 8328356242 15055 FAIRFIELD MEADOWS DR CYPRESS TX 77433 AMBER DENTON PRESIDENT 2024-05-09 2022 2023-04-26 12:10:37Z X AMBER DENTON 15055 FAIRFIELD MEADOWS DR STE 130 100 CYPRESS TX 77433 532494 false X WWW.NBIADISORDERS.ORG X 1996 CA IN OUR DRIVE TO FIND A CURE FOR NBIA WE PROVIDE SUPPORT TO FAMILIES EDUCATE THE PUBLIC AND ACCELERATE RESEARCH WITH COLLABORATORS FROM AROUND THE WORLD. 9 9 3 40 0 0 276079 517788 0 0 310 12323 0 2383 276389 532494 104699 152220 0 0 90869 112125 0 0 10992 72061 163941 267629 428286 8760 104208 846663 918162 188117 155408 658546 762754 IN OUR DRIVE TO FIND A CURE FOR NBIA WE PROVIDE SUPPORT TO FAMILIES EDUCATE THE PUBLIC AND ACCELERATE RESEARCH WITH COLLABORATORS FROM AROUND THE WORLD. false false 170715 152220 0 RESEARCH: THE ASSOCIATION RAISES MONEY TO FUND GRANTS & CLINICAL PROJECTS FOR SCIENTIFIC AND MEDICAL RESEARCH TO ASSIST IN FINDING A CURE FOR NBIA DISORDERS. IN THIS YEAR $278,815.61 WAS RAISED FOR RESEARCH. THIS YEAR THE ASSOCIATION AWARDED THREE NBIA RESEARCH GRANTS TOTALING $152,220.00. ADDITIONALLY THE ASSOCIATION PARTICIPATES IN HOLDING INTERNATIONAL SCIENTIFIC SYMPOSIA EVERY TWO YEARS. THE SYMPOSIUM PROVIDES A FORUM FOR RESEARCHERS TO SHARE INFORMATION AND COMMON INTERESTS LAYING THE GROUNDWORK FOR POTENTIAL COLLABORATIONS IN THE FUTURE. THE EIGHTH INTERNATIONAL SCIENTIFIC SYMPOSIUM WAS HELD FROM OCTOBER 13TH TO 15TH 2022 IN LAUSANNE SWITZERLAND. THE NINTH SYMPOSIUM WILL BE HELD IN 2024 IN ISTANBUL TURKEY. 178975 0 0 EDUCATION & SUPPORT: THIS PROGRAM ENCOMPASSES MANY AREAS OF WORK BY THE ORGANIZATION: THE ASSOCIATION PUBLISHES A FREE NEWSLETTER THREE TIMES PER YEAR. THE NEWSLETTER PROMOTES AWARENESS OF NBIA EDUCATES THE PUBLIC AND MEDICAL COMMUNITY ABOUT THESE RARE DISORDERS SUPPORTS AFFECTED FAMILIES AND DISSEMINATES INFORMATION ON NBIA RESEARCH AND TREATMENTS. FAMILY CONFERENCES ARE HELD EVERY TWO YEARS. CONFERENCES PROVIDE A FORUM FOR NBIA AFFECTED FAMILIES FROM AROUND THE WORLD TO NETWORK RECEIVE INFORMATION ABOUT RESEARCH AND TREATMENTS SHARE INFORMATION AND SUPPORT EACH OTHER. THE 12TH INTERNATIONAL FAMILY CONFERENCE WAS HELD MAY 18TH 21ST 2023 IN HOUSTON TEXAS. THE 13TH FAMILY CONFERENCE WILL BE HELD IN GREENVILLE SOUTH CAROLINA IN 2025. ALSO THE ASSOCIATION RESPONDS TO GENERAL EMAILS FROM NBIA FAMILIES FROM THE PUBLIC AND OTHERS IN ADDITION TO ALL DISSEMINATION ACTIVITIES. THE ASSOCIATION MAINTAINS A WEB PRESENCE AT WWW.NBIADISORDERS.ORG WHICH PROVIDES A DATABASE OF CURRENT ACCURATE INFORMATION ON NBIA. THE ASSOCIATION ALSO HOLDS VIRTUAL WEBINARS ON TOPICS OF INTEREST THROUGHOUT THE YEAR AND HAS ZOOM SUPPORT GROUP MEETINGS FOR NBIA FAMILIES. THE ASSOCIATION HAS A NETWORKING PROGRAM A FACEBOOK GROUP & FACEBOOK CAUSE PAGE IS ON TWITTER INSTAGRAM AND LINKEDIN HAS MULTIPLE VIDEOS POSTED ON AN NBIA YOUTUBE CHANNEL AND HAS A VOLUNTEER SOCIAL MEDIA DIRECTOR. THESE ALL PROVIDE A FORUM FOR AFFECTED INDIVIDUALS THEIR FAMILIES CAREGIVERS AND OTHERS AFFECTED BY SOMEONE LIVING WITH NBIA TO RECEIVE EMOTIONAL SUPPORT AND TO SHARE INFORMATION. THESE FUNCTIONS ALSO HELP PROMOTE AWARENESS AND EDUCATE THE PUBLIC AND THE MEDICAL COMMUNITY ABOUT NBIA DISORDERS. 9731 0 0 NBIA ALLIANCE: THE ASSOCIATION IS ACTING AS FISCAL AGENT FOR THE NBIA ALLIANCE. THE ALLIANCE IS AN UMBRELLA ORGANIZATION FOR NBIA PATIENT ADVOCACY NONPROFIT ASSOCIATIONS IN TEN COUNTRIES. THE ALLIANCE WORKS TO FURTHER NBIA RESEARCH AND HELPS TO MAINTAIN AN INTERNATIONAL PATIENT REGISTRY AND BIOBANK. 0 0 0 359421 true true false false false false false false false false true false false false true false true false false false true true true false false false false true false true false false false false false false false false false false false false false false false false false true 0 0 true 3 true false false false false false false false 0 false false false false false false false X 9 9 false false false false false false false true true false false true true true true false false true false false AZ AR CA CO FL GA IL KY LA MD MA MI MN NH NM NY NC OH OK OR PA RI SC TN VA WA X X X CAROLYN BANIK 8124837781 12025 CASTLE ROW OVERLOOK CARMEL IN 46033 AMBER DENTON PRESIDENT 40.00 0.00 X 11667 0 0 CAROLYN BANIK TREASURER 4.00 0.00 X X 0 0 0 MEG TALLEY DYER VICE PRESIDENT 2.00 0.00 X X 0 0 0 MATTHEW RITZMAN SECRETARY 2.00 0.00 X X 0 0 0 SARAH DOERR TRUSTEE 2.00 0.00 X 0 0 0 JEFFREY GARTMAN TRUSTEE 2.00 0.00 X 0 0 0 VANESSA SMITH TRUSTEE 2.00 0.00 X 0 0 0 JENNIFER SANCHEZ TRUSTEE 2.00 0.00 X 0 0 0 JENNIFER WILDVANK TRUSTEE 2.00 0.00 X 0 0 0 DR JAMES BOURGEOIS TRUSTEE 2.00 0.00 X 0 0 0 PATRICIA V WOOD FORMER PRESIDENT 20.00 0.00 X X 62920 0 0 74587 0 0 0 true false false 0 0 0 0 0 517788 0 517788 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 12323 0 0 12323 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 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 0 0 0 0 0 0 0 0 2383 0 0 2383 2383 532494 0 0 14706 82220 82220 0 0 70000 70000 0 0 74587 54064 12557 7966 0 0 0 0 26954 7786 19168 0 0 0 0 0 1291 704 297 290 9293 4811 2620 1862 0 0 0 0 7500 0 7500 0 7200 0 7200 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 0 0 0 0 0 0 0 0 0 0 3066 2759 307 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 219 197 22 0 3299 1059 2240 0 FAMILY CONFERENCE 93661 93661 0 0 SYMPOSIUM CONFERENCE 12251 12251 0 0 CLINICAL PROGRAMS 9841 9841 0 0 WEBSITE 5606 5606 0 0 21298 14462 5962 874 428286 359421 57873 10992 0 0 0 0 0 0 840224 916738 0 0 0 0 0 0 0 0 0 0 0 0 6219 1424 1262 1262 219 0 0 0 0 0 0 0 0 0 1 0 846663 918162 851 72 140000 126000 10522 0 0 0 0 0 0 0 0 0 0 0 36744 29336 188117 155408 X 427776 434573 230770 328181 658546 762754 846663 918162 104208 0 0 0 0 0 X false true X true false X 315204 230671 564618 276079 517788 1904360 0 0 0 0 0 0 0 0 0 0 0 0 315204 230671 564618 276079 517788 1904360 396968 1507392 584 379 253 310 12323 13849 0 0 0 0 0 0 0 0 0 0 2383 2383 1920592 0.7849 0.8434 X Part II - Line 10 | Year:, Amount:, Description:| 2018, 0, | 2019, 0| 2020, 0| 2021, 0| 2022, 2383OTHER INCOME| RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1262 1262 0 CONTRACTS PAYABLE 22000 ACCRUED EXPENSES 7336 29336 532494 0 532494 0 532494 428286 0 428286 0 428286 true Europe Including Iceland and Greenland 0 0 Grantmaking 0 70000 0 0 0 0 70000 70000 Europe (Including Iceland and Greenland) MEDICAL RESEARCH 10000 WIRE Europe (Including Iceland and Greenland) MEDICAL RESEARCH 60000 WIRE 2 false false false false false false Part I Line 2 GRANT RECIPIENTS FOR ONE YEAR PROJECTS WILL RECEIVE FUNDING IN THREE STAGES 1 3 AT START OF PROJECT; 1 3 AT SIX MONTHS AFTER AN INTERIM SCIENTIFIC AND FINANCIAL REPORT IS SUBMITTED AND APPROVED; FINAL PAYMENT AT THE CONCLUSION OF THE PROJECT AFTER FINAL SCIENTIFIC AND FINANCIAL REPORTS ARE SUBMITTED AND APPROVED. REPORTS ARE REVIEWED BY THE ASSOCIATION'S SCIENTIFIC AND MEDICAL ADVISORY BOARD BEFORE ANY PAYMENTS ARE MADE. PAYMENT IS MADE ONLY FOR ACTUAL EXPENDITURES LIMITED TO GRANT AMOUNT. IF EXPENSES WERE UNDER BUDGET THE FINAL CHECK WILL REFLECT THE VARIANCE. FOR TWO YEAR PROJECTS THE THREE FUNDING STAGES ARE: 1 3 AT START 1 3 AT ONE YEAR AND FINAL PAYMENT AT CONCLUSION SUBJECT TO THE SAME REQUIREMENTS AS FOR ONE YEAR PROJECTS. true UNIVERSITY OF ROCHESTER MEDICAL CENTER 60 CORPORATE WOODS SUITE 310 ROCHESTER NY 14627 160743209 70000 0 MEDICAL RESEARCH UNIVERSITY OF PENNSYLVANIA 125 SOUTH 31ST ST PHILADELPHIA PA 19104 231352685 12220 0 MEDICAL RESEARCH 0 2 Part I Line 2 GRANT RECIPIENTS FOR ONE YEAR PROJECTS WILL RECEIVE FUNDING IN THREE STAGES 1 3 AT START OF PROJECT; 1 3 AT SIX MONTHS AFTER AN INTERIM SCIENTIFIC AND FINANCIAL REPORT IS SUBMITTED AND APPROVED; FINAL PAYMENT AT THE CONCLUSION OF THE PROJECT AFTER FINAL SCIENTIFIC AND FINANCIAL REPORTS ARE SUBMITTED AND APPROVED. REPORTS ARE REVIEWED BY THE ASSOCIATION'S SCIENTIFIC AND MEDICAL ADVISORY BOARD BEFORE ANY PAYMENTS ARE MADE. PAYMENT IS MADE ONLY FOR ACTUAL EXPENDITURES LIMITED TO GRANT AMOUNT. IF EXPENSES WERE UNDER BUDGET THE FINAL CHECK WILL REFLECT THE VARIANCE. FOR TWO YEAR PROJECTS THE THREE FUNDING STAGES ARE: 1 3 AT START 1 3 AT ONE YEAR AND FINAL PAYMENT AT CONCLUSION SUBJECT TO THE SAME REQUIREMENTS AS FOR ONE YEAR PROJECTS. X X false false false false false false false false false PATRICIA V WOOD FORMER PRESIDENT 62920 0 0 0 0 0 0 0 0 0 62920 0 0 0 AMBER DENTON PRESIDENT 11667 0 0 0 0 0 0 0 0 0 11667 0 0 0 Part VI, Line 11b THE PRESIDENT & FINANCE COMMITTEE PROVIDE INPUT IN DRAFTING THE TAX RETURN MAKING COMMENTS UPDATES AND CORRECTIONS. ALL TRUSTEES REVIEW THE TAX RETURN BEFORE IT IS FILED. Part VI, Line 12c THE ASSOCIATION REQUIRES INDIVIDUALS ANNUALLY TO VERIFY THAT THEY HAVE READ THE CONFLICT OF INTEREST POLICY AND TO SIGN A CONFLICT OF INTEREST DISCLOSURE STATEMENT INDICATING ANY CONFLICTS. Part VI, Line 15 TWO TRUSTEES WERE APPOINTED TO AN HR COMMITTEE WHICH OVERSEES COMPENSATION. THIS COMMITTEE SET THE COMPENSATION FOR THE PRESIDENT BY INVESTIGATING THE SALARY PAID TO PRESIDENTS AT COMPARABLE NONPROFIT ASSOCIATIONS AND MAKING THIS POSITION'S SALARY COMPARABLE. ADDITIONALLY CALIFORNIA HAS MINIMUM REQUIREMENTS FOR SALARIED INDIVIDUALS THAT THE ASSOCIATION MUST COMPLY WITH. THE HR COMMITTEE REPORTS ITS FINDINGS TO THE BOARD AND IT IS DOCUMENTED IN BOARD MINUTES. Part VI, Line 19 FINANCIAL STATEMENTS GOVERNING DOCUMENTS AND CONFLICT OF INTEREST POLICY ARE AVAILABLE TO THE PUBLIC UPON REQUEST.