2026-02-10T09:46:09-05:00 2025-09-30 990 2024-10-01 330712327 NBIA Disorders Association NBIA 8328356242 15055 FAIRFIELD MEADOWS DRIVE CYPRESS TX 77433 Kristy Jorgenson Accountant 5412922096 2026-02-11 2024 2025-03-06 01:10:19Z Amber Denton 15055 FAIRFIELD MEADOWS DRIVE SUITE 130 100 CYPRESS TX 77433 526469 false X 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 0 0 0 225799 509742 0 0 15297 16727 155 0 241251 526469 95000 110635 0 0 152534 145627 0 0 8831 42535 174923 290069 431185 -48818 95284 997387 1061655 283450 252437 713937 809218 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 149307 110635 184088 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 $181,547 was raised for research and the association awarded a total of $110,635 in research grants. The additional revenue was from interest earned on research funds. 180626 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. Every other year we hold a Family Conference to bring together individuals and families affected by NBIA disorders for four days of learning support and connection. This years conference expenses totaled $120,211. 1303 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 331236 true true false 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 false 1 0 true 3 true false false false false false false false 0 false false false false false false false 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 Kristy Jorgenson 5412922096 1481 Beachcomber Blvd Hardeeville SC 29927 Amber Denton President 40.00 0.00 X 69999 0 0 Carolyn Banik Treasurer 2.00 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 30357 0 0 100356 0 0 0 true false false 0 0 0 0 0 509742 0 509742 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 16727 0 0 16727 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 0 0 0 0 0 526469 0 0 16727 0 0 0 0 110635 110635 0 0 135147 72111 57562 5474 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 10480 5882 4270 328 0 0 0 0 8500 0 8500 0 6716 0 6716 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 10702 9632 1070 0 0 0 0 0 1000 900 100 0 0 0 0 0 0 0 0 0 0 0 0 0 3160 0 3160 0 Education & Support 121149 121149 0 0 Software 4804 1441 961 2402 Bank Fees 6037 716 5321 0 miscellaneous 12855 8770 3458 627 0 0 0 0 431185 331236 91118 8831 0 0 0 0 66187 203404 929063 852787 0 0 0 0 0 0 0 0 0 0 0 0 2137 5464 1339 1339 0 0 0 0 0 0 0 0 0 0 0 0 997387 1061655 19310 25142 180000 226635 30140 0 0 0 0 0 0 0 0 0 0 0 54000 660 283450 252437 X 412822 475112 301115 334107 713937 809219 997387 1061656 95284 0 0 0 -2 0 X true X true X true false X 564618 276079 517788 225799 509742 2094026 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 564618 276079 517788 225799 509742 2094026 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 2094026 253 310 12323 15296 16727 44909 0 0 0 0 0 0 253 310 12323 15296 16727 44909 0 0 0 0 0 0 0 0 2383 154 0 2537 564871 276389 532494 241249 526469 2141472 0.9778 0.8477 0.021 X Part III - Line 12 | Year:, Amount:, Description:| 2022, 2383net change in value of the Treasury Bill| 2023, 154net change in value of the Treasury Bill| RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1339 1339 0 0 Contracts payable 660 660 526469 0 526469 0 526469 431185 0 431185 0 431185 Europe Including Iceland and Greenland 0 0 Grantmaking n a 135635 Europe Including Iceland and Greenland 0 0 Grantmaking n a 25000 0 0 0 0 160635 160635 Europe (Including Iceland and Greenland) Advancing Cardiac Glycoside Therapy for Beta Propeller Protein Associated Neurodegeneration (BPAN) 135635 wire transfer Europe (Including Iceland and Greenland) NCOA4 induction to amelioriate WDR45 deficiency 25000 wire transfer false false false false false false false false false false false false false false false Amber Denton President 69999 0 0 0 0 0 0 0 0 0 69999 0 0 0 Patricia V Wood Former President 30357 0 0 0 0 0 0 0 0 0 30357 0 0 0 Part VI, Line 11a The accountant prepares the Associations federal and state tax returns. A draft is provided to the President for review and comment. A final return will be provided to the Associations Finance Sub-committee for review comment and approval. The final returns will be signed by the President and filed with IRS and California FTB. 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.