2025-02-14T05:25:46-05:00 2024-09-30 990 2023-10-01 330712327 Nbia Disorders Association % Amber Denton NBIA 8328356242 15055 FAIRFIELD MEADOWS DR STE 13 CYPRESS TX 77433 Amber Denton President 2025-02-14 2023 2025-03-06 01:10:19Z Amber Denton 15055 FAIRFIELD MEADOWS DR STE 13 CYPRESS TX 77433 241251 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 517788 225799 0 0 12323 15297 2383 155 532494 241251 152220 95000 0 0 112125 152534 0 0 12171 163941 42535 428286 290069 104208 -48818 918162 997387 155408 283450 762754 713937 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 122480 95000 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. This year $96,262 was raised for research and the association awarded a total of $95,000 in research grants. The additional revenue was from interest earned on research funds. 68877 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. 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 support. 2040 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 organizations in ten countries. The Alliance works to further NBIA research and helps to maintain an international patient registry and biobank. 0 0 0 193397 true true false false false false false false false true false false false true false true false false false true true false false false false false false 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 AR CA CO FL GA IL KY MD MA MI MN NH NM NY NC OH OK OR PA RI SC TN VA WA X Carolyn Banik 8124837781 12025 Castle Row Overlook Carmel IN 46033 Amber Denton President 40.00 0 X 23333 0 0 Carolyn Banik Treasurer 4.00 0 X X 0 0 0 Meg Talley Dyer Vice President 2.00 0 X X 0 0 0 Matthew Ritzman Secretary 2.00 0 X X 0 0 0 Sarah Doerr Trustee 2.00 0 X 0 0 0 Jeffrey Gartman Trustee 2.00 0 X 0 0 0 Vanessa Smith Trustee 2.00 0 X 0 0 0 Jennifer Sanchez Trustee 2.00 0 X 0 0 0 Jennifer Wildvank Trustee 2.00 0 X 0 0 0 Dr James Bourgeois Trustee 2.00 0 X 0 0 0 Patricia V Wood Former President 20.00 0 X 63959 0 0 87292 0 0 0 true false false 0 0 0 0 0 225799 0 225799 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 15297 0 0 15297 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 0 155 0 0 155 155 241251 0 0 15452 0 0 0 0 95000 95000 0 0 87292 45826 35227 6239 0 0 0 0 52679 27655 21259 3765 0 0 0 0 1651 867 666 118 10912 5460 4714 738 0 0 0 0 0 0 0 0 10604 0 10604 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 0 729 656 73 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 77 70 7 0 3584 3310 274 0 Education & support 4089 4089 0 0 Bank fees 4990 772 4218 0 0 0 0 0 0 0 0 0 18462 9692 7459 1311 290069 193397 84501 12171 0 0 0 0 0 0 916738 995250 0 0 0 0 0 0 0 0 0 0 0 0 1424 2137 1262 1262 0 0 0 0 0 0 0 0 0 0 0 0 918162 997387 72 19310 126000 180000 0 30140 0 0 0 0 0 0 0 0 0 0 29336 54000 155408 283450 X 434573 412822 328181 301115 762754 713937 918162 997387 -48818 0 0 0 1 0 X false true true false X 230671 564618 276079 517788 225799 1814955 0 0 0 0 0 0 0 0 0 0 0 0 230671 564618 276079 517788 225799 1814955 250000 1564955 379 253 310 12323 15296 28561 0 0 0 0 0 0 0 0 0 2383 154 2537 1846053 0 0.8477 0.7849 X Part II - Line 10 | Year:, Amount:, Description:| 2019, 0, | 2020, 0| 2021, 0| 2022, 2383realized gain on treasury bill| 2023, 154realized gain on treasury bill| RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1339 1339 0 0 Contracts payable 54000 54000 241251 0 241251 0 241251 290069 0 290069 0 290069 true Europe Including Iceland and Greenland 0 0 Grantmaking grantmaking 100000 0 0 0 0 100000 100000 Europe (Including Iceland and Greenland) medical research 100000 wire transfer 1 0 false false false false false false Part I, II, III and IV | PartandLinenumber:,Explanation:| 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 associations 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 the 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 Amber Denton President 23333 0 0 0 0 0 0 0 0 0 23333 0 0 0 Patricia V Wood Former President 63959 0 0 0 0 0 0 0 0 0 63959 0 0 0 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 positions salary comparable. Additionally California has minimum requirements for salaried individuals that the association must comply with. The HR Committee reports its finding 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.