NBIA Disorders Association
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.
NBIA Disorders Association at a glance
In short: NBIA Disorders Association reported $111K in grants paid in 2025 (a total; its filing lists no individual grants). Source: 2025 IRS Form 990.
- Grants paid (2025)
- $110,635 — reported as a total on the IRS filing, without an itemized list
- +16.5% vs 2024
- Total assets
- $1,061,655
- +6.4% vs 2024
- Revenue (2025)
- $526,469
- +118.2% vs 2024
- Net investment income (2025)
- $16,727
- +9.3% vs 2024
- Expenses (2025)
- $431,185
- +48.6% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
Who NBIA Disorders Association funds
How this funder distributes its grants
Grant Size Distribution
5 grants across all recorded years
The most common grant size was under $50K: 2 grants of 5 (40%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2019 to 2025, annual grant giving ranged from $24K (2019) to $115K (2021). In 2025 it reported $111K in grants paid, as a total without an itemized list.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Rochester Medical Center Rochester, NY | Medical Research | $70,000 |
| University of Pennsylvania Philadelphia, PA | Medical Research | $12,220 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $1,061,655 | $526,469 | $431,185 | $110,635 | Total only | $16,727 |
| 2024 | $997,387 | $241,251 | $290,069 | $95,000 | Total only | $15,297 |
| 2023 | $918,162 | $532,494 | $428,286 | $82,220 | 2 | $12,323 |
| 2022 | $846,663 | $276,389 | $267,629 | $111,894 | 2 | $310 |
| 2021 | $786,180 | $564,871 | $285,400 | $115,000 | 1 | $253 |
| 2020 | $477,142 | $231,050 | $238,596 | $45,000 | Total only | $379 |
| 2019 | $538,549 | $315,788 | $367,191 | $23,651 | 2 | $584 |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
About NBIA Disorders Association
Based on IRS filings
NBIA Disorders Association is a public charity focused on Medical Research, based in Cypress, TX. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $1.1M in total assets. In 2025, it reported $111K in grants paid as a total on its IRS filing, without an itemized list. Net investment income was $17K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
NBIA Disorders Association is led by Amber Denton, President since 2023 (on filings since 2020); 2 of 11 officers listed in 2025 are compensated.
Officers on the 2025 filing
Amber Denton
President
Trustee → Vice President, 2022
Vice President → President, 2023
On filings since 2020
40 hrs/week
$12K (2023) → $70K (2025)
Sarah Doerr
Trustee
On filings since 2019
2 hrs/week
No compensation reported
James Bourgeois
Trustee
On filings since 2020
2 hrs/week
No compensation reported
Jennifer Sanchez
Trustee
On filings since 2022
2 hrs/week
No compensation reported
Jennifer Wildvank
Trustee
On filings since 2022
2 hrs/week
No compensation reported
Vanessa Smith
Trustee
On filings since 2022
2 hrs/week
No compensation reported
Jeffrey Gartman
Trustee
On filings since 2023
2 hrs/week
No compensation reported
Patricia V Wood
Former President
President → Former President, 2023
On filings since 2019
20 hrs/week
$45K (2019) → $30K (2025)
Matthew Ritzman
Secretary
Chair → Secretary, 2023
On filings since 2019
2 hrs/week
No compensation reported
Meg Talley Dyer
Vice President
Trustee → Vice President, 2023
On filings since 2019
2 hrs/week
No compensation reported
Carolyn Banik
Treasurer
Trustee → Treasurer, 2023
On filings since 2022
2 hrs/week
No compensation reported
Former officers (11)
- Former: Mary Tapke (2019–2022) — Secretary
- Former: Richard Tifone (2019–2022) — Treasurer
- Former: Jeff Gartman (2022) — Trustee
- Former: Kimberly Burke (2019–2021) — Trustee
- Former: Mary Ann Roser (2019–2021) — Vice President
- Former: Veronica Bonfiglio (2019–2021) — Trustee
- Former: Stephanie Zhadkevich (2020–2021) — Trustee
- Former: Erin Davis (2019–2020) — Trustee
- Former: Susan Laupola (2019–2020) — Trustee
- Former: Kathryn Kadamus (2019) — Trustee
- Former: Pamela Craft (2019) — Trustee
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $70K, to Amber Denton (President). 2 officers or directors reported compensation on that filing.
Frequently asked questions about NBIA Disorders Association
How much does NBIA Disorders Association give each year?
NBIA Disorders Association reported $111K in grants paid in 2025 on its 2025 IRS Form 990, as a total without an itemized list of grants. In 2024 it reported $95K in grants paid.
How large is NBIA Disorders Association?
NBIA Disorders Association reported $1.1M in total assets on its 2025 IRS Form 990. Its revenue that year was $526K.
What is NBIA Disorders Association?
NBIA Disorders Association is a public charity focused on Medical Research, based in Cypress, TX. It holds $1.1M in total assets as of 2025.
Where does NBIA Disorders Association operate?
NBIA Disorders Association has awarded grants in Connecticut, Illinois, New York, Oregon, Pennsylvania.
What is NBIA Disorders Association's EIN?
NBIA Disorders Association's EIN (Employer Identification Number) is 33-0712327. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS January 11, 2021)
- Updated Form 990 for fiscal year 2024 (received by the IRS February 14, 2025)
- Updated Form 990 for fiscal year 2025 (received by the IRS February 10, 2026)
- Updated Form 990 for fiscal year 2019 (received by the IRS January 31, 2020)
- Updated Form 990 for fiscal year 2022 (received by the IRS February 8, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 9, 2024)
- Updated Form 990 for fiscal year 2021 (received by the IRS February 1, 2022)
Live grants for the work NBIA Disorders Association funds
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