Nonprofit · EIN 33-0712327
NBIA DISORDERS ASSOCIATION
Tax-exempt · CYPRESS, TX 77433
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| September 30, 2025 | 990 | $526,469 | $431,185 | $95,284 | $1,061,655 | $252,437 | $809,218 |
| September 30, 2024 | 990 | $241,251 | $290,069 | -$48,818 | $997,387 | $283,450 | $713,937 |
| September 30, 2023 | 990 | $532,494 | $428,286 | $104,208 | $918,162 | $155,408 | $762,754 |
Financial details: 990 for the year ended September 30, 2025
Revenue
- Contributions, gifts and grants
- $509,742
- Program service revenue
- $0
- Investment income
- $16,727
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $110,635
- Compensation of officers, directors and key employees
- $135,147
- Salaries, compensation and benefits (total)
- $145,627
- Professional fundraising fees
- $0
- Legal fees
- $8,500
- Accounting fees
- $6,716
- Travel
- $10,702
- Program services (functional)
- $331,236
- Management and general (functional)
- $91,118
- Fundraising (functional)
- $8,831
Balance sheet and other
- Total assets, start of year
- $997,387
- Total assets, end of year
- $1,061,655
- Total liabilities, end of year
- $252,437
- Net assets, end of year
- $809,218
- Net assets without donor restrictions
- $475,112
- Net assets with donor restrictions
- $334,107
- Gross receipts
- $526,469
- Employees
- 3
- Volunteers
- 0
- Year formed
- 1996
- State of legal domicile
- CA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended September 30, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Amber Denton | President Officer | 40 | $69,999 |
| Patricia V Wood | Former President Former | 20 | $30,357 |
| Carolyn Banik | Treasurer Trustee or director, Officer | 2 | $0 |
| Meg Talley Dyer | Vice President Trustee or director, Officer | 2 | $0 |
| Matthew Ritzman | Secretary Trustee or director, Officer | 2 | $0 |
| Sarah Doerr | Trustee Trustee or director | 2 | $0 |
| Jeffrey Gartman | Trustee Trustee or director | 2 | $0 |
| Vanessa Smith | Trustee Trustee or director | 2 | $0 |
| Jennifer Sanchez | Trustee Trustee or director | 2 | $0 |
| Jennifer Wildvank | Trustee Trustee or director | 2 | $0 |
| Dr James Bourgeois | Trustee Trustee or director | 2 | $0 |
990 for the year ended September 30, 2024: 11 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Patricia V Wood | Former President Former | 20 | $63,959 |
| Amber Denton | President Officer | 40 | $23,333 |
| Carolyn Banik | Treasurer Trustee or director, Officer | 4 | $0 |
| Meg Talley Dyer | Vice President Trustee or director, Officer | 2 | $0 |
| Matthew Ritzman | Secretary Trustee or director, Officer | 2 | $0 |
| Sarah Doerr | Trustee Trustee or director | 2 | $0 |
| Jeffrey Gartman | Trustee Trustee or director | 2 | $0 |
| Vanessa Smith | Trustee Trustee or director | 2 | $0 |
| Jennifer Sanchez | Trustee Trustee or director | 2 | $0 |
| Jennifer Wildvank | Trustee Trustee or director | 2 | $0 |
| Dr James Bourgeois | Trustee Trustee or director | 2 | $0 |
990 for the year ended September 30, 2023: 11 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| PATRICIA V WOOD | FORMER PRESIDENT Officer, Former | 20 | $62,920 |
| AMBER DENTON | PRESIDENT Officer | 40 | $11,667 |
| CAROLYN BANIK | TREASURER Trustee or director, Officer | 4 | $0 |
| MEG TALLEY DYER | VICE PRESIDENT Trustee or director, Officer | 2 | $0 |
| MATTHEW RITZMAN | SECRETARY Trustee or director, Officer | 2 | $0 |
| SARAH DOERR | TRUSTEE Trustee or director | 2 | $0 |
| JEFFREY GARTMAN | TRUSTEE Trustee or director | 2 | $0 |
| VANESSA SMITH | TRUSTEE Trustee or director | 2 | $0 |
| JENNIFER SANCHEZ | TRUSTEE Trustee or director | 2 | $0 |
| JENNIFER WILDVANK | TRUSTEE Trustee or director | 2 | $0 |
| DR JAMES BOURGEOIS | TRUSTEE Trustee or director | 2 | $0 |
Address and contacts
- Address (IRS master file)
- 15055 FAIRFIELD MEADOWS DRIVE, CYPRESS, TX 77433-5394
- In care of
- % AMBER DENTON
- Principal officer (990 for 2024)
- Amber Denton, 15055 FAIRFIELD MEADOWS DRIVE, SUITE 130 100, CYPRESS, TX 77433
- Signed the 990
- Kristy Jorgenson, Accountant
- Phone
- (832) 835-6242
Mission
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.
Program accomplishments
- 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.Expenses $149,307 · grants $110,635 · revenue $184,088
- 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.Expenses $180,626
- 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.Expenses $1,303
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in September, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | September 30, 2026 | February 16, 2027 | Not due yet |
| 2024 | September 30, 2025 | February 17, 2026 | 990 on file |
| 2023 | September 30, 2024 | February 18, 2025 | 990 on file |
IRS record
- EIN
- 33-0712327
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1997
- Accounting year ends
- September
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Medical research (H030)
- Assets (IRS master file)
- $1,061,655
- Income (IRS master file)
- $526,469
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | September 2025 | $526,469 | $431,185 | $1,061,655 | XML |
| 990 | September 2024 | $241,251 | $290,069 | $997,387 | XML |
| 990 | September 2023 | $532,494 | $428,286 | $918,162 | XML |
| 990 | September 2022 | $276,389 | $267,629 | $846,663 | IRS |
| 990 | September 2021 | – | – | – | IRS |
| 990 | September 2020 | – | – | – | IRS |
| 990 | September 2019 | – | – | – | IRS |
| 990 | September 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 33-0712327).
Questions about NBIA DISORDERS ASSOCIATION
- What is the EIN of NBIA DISORDERS ASSOCIATION?
- The employer identification number (EIN) of NBIA DISORDERS ASSOCIATION is 33-0712327.
- Is NBIA DISORDERS ASSOCIATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1997.
- Are donations to NBIA DISORDERS ASSOCIATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NBIA DISORDERS ASSOCIATION file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NBIA DISORDERS ASSOCIATION due?
- The return for tax year 2025 (the year ending September 30, 2026) is due February 16, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NBIA DISORDERS ASSOCIATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended September 2025.
- Who is the principal officer of NBIA DISORDERS ASSOCIATION?
- The 990 for the year ended September 30, 2025 names Amber Denton.
- Who are the officers and directors of NBIA DISORDERS ASSOCIATION?
- The 990 for the year ended September 30, 2025 lists 11 people; 2 received compensation from the organization, the highest $69,999 (Amber Denton, President).
- How much revenue does NBIA DISORDERS ASSOCIATION have?
- On its 990 for the year ended September 30, 2025 it reported revenue of $526,469, expenses of $431,185 and total assets of $1,061,655 at year end.
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