Nonprofit · EIN 84-3711526
NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED
Tax-exempt · MELBOURNE, FL 32934
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990-EZ | $64,649 | $56,566 | $8,083 | $96,171 | $2,500 | $96,140 |
| December 31, 2024 | 990-EZ | $82,920 | $62,798 | $20,122 | $88,057 | $0 | $88,057 |
| December 31, 2023 | 990-EZ | $40,643 | $17,632 | $23,011 | $67,935 | – | $67,935 |
Financial details: 990-EZ for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $64,570
- Investment income
- $79
Expenses
- Grants and similar amounts paid
- $56,075
- Compensation of officers, directors and key employees
- $0
- Other expenses
- $491
Balance sheet and other
- Total assets, start of year
- $88,057
- Total assets, end of year
- $96,171
- Total liabilities, end of year
- $2,500
- Net assets, end of year
- $96,140
- Cash, savings and investments
- $96,171
- Gross receipts
- $64,649
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-EZ for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Joyce Willard-Williford | President | 4 | $0 |
| Susan Wagner | Vice President | 2 | $0 |
| Julie Kerner | Secretary | 2 | $0 |
| Robert Metzger | Treasurer | 2 | $0 |
| Virginia Irvine | Director | 2 | $0 |
| Ruth Walker | Director | 2 | $0 |
| Kimberly Thomson | Director | 2 | $0 |
| Dave Asinger | Director | 2 | $0 |
| Sylvette Ayala-Pena | Director | 2 | $0 |
990-EZ for the year ended December 31, 2024: 8 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Joyce Willard-Williford | President | 4 | $0 |
| Susan Wagner | Vice President | 2 | $0 |
| Robert Metzger | Treasurer | 2 | $0 |
| Julie Kerner | Secretary | 2 | $0 |
| Virginia Irvine | Director | 2 | $0 |
| Ruth Walker | Director | 2 | $0 |
| Ricky Ditzel | Director | 2 | $0 |
| Kim Thomson | Director | 2 | $0 |
990-EZ for the year ended December 31, 2023: 7 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Susan Wager | President | 4 | $0 |
| Joyce Willard-Williford | VP Secretary Treasurer | 4 | $0 |
| Ginger Irvine | Director | 2 | $0 |
| Ruth Walker | Director | 2 | $0 |
| Robert Metzger | Director | 2 | $0 |
| Julie Kerner | Director | 2 | $0 |
| Ricky Ditzel | Director | 2 | $0 |
Address and contacts
- Address (IRS master file)
- 2285 HARLOCK RD, MELBOURNE, FL 32934-7666
- In care of
- % JOYCE WILLARD WILLIFORD
- Mailing address (990-N for 2020)
- 2285 Harlock Road, Melbourne FL 32934
- Principal officer (990-N for 2020)
- Susan Wagner, 14A Edge Court, Greenville SC 29609
- Signed the 990-EZ
- Robert Metzger, Treasurer
- Website
- www.naadvocacyusa.org
Mission
The primary purpose of this corporation is to operate exclusively for charitable purposes and in furtherance of such goals is authorized to do any or all activities which it is empowered to do under the Articles of Incorporation and Florida law. No activities will be allowed which would jeopardize the corporations tax-exempt status or otherwise be inconsistent with its classification as an organization described in sections 501 c3 of the Internal Revenue Code.The specific purposes of the corporation is to support patients with neuroacanthocytosis-related diseases and their caregivers to promote awareness of neuroacanthocytosis-related diseases and to support research aimed at alleviation of said diseases.
Program accomplishments
- In 2025 we continued to distribute grant payments to the Icahn School of Medicine for a brain tissue research project called "Neuropathology of Neuroacanthocytosis." Both of the diseases this organization represents - VPS13A formerly called chorea-acanthocytosis and XK disease formerly called McLeod syndrome are ultra rare diseases with only a handful of patients in the USA. The brain study represents the first look at human brain tissue of patients who had the disease. These diseases are ultra-rare. XK disease has a 1:10,000,000 prevalence and VPS13A has a 1:1,000,000 prevalence worldwide. Research results have been published in the Parkinson and Movement Disorders Societys Movement Disorder journal.grants $37,500
- We supported the bi-annual International Symposium on Neuroacanthocytosis Diseases in Lausanne Switzerland which brought together patients families and caregivers researchers and clinicians from around the world updates on the latest research and also a program to benefit 15 patients and families who were able to attend https: naadvocacy.org symposia .grants $10,575
- We helped to fund an on-going research effort involving mice in Italy.grants $8,000
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 December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990-EZ on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990-EZ on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990-EZ on file |
IRS record
- EIN
- 84-3711526
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (509(a)(2))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2020
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G50)
- Assets (IRS master file)
- $96,171
- Income (IRS master file)
- $64,649
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990-EZ | December 2025 | $64,649 | $56,566 | $96,171 | IRS |
| 990-EZ | December 2024 | $82,920 | $62,798 | $88,057 | IRS |
| 990-EZ | December 2023 | $40,643 | $17,632 | $67,935 | XML |
| 990-EZ | December 2022 | – | – | – | IRS |
| 990-EZ | December 2021 | – | – | – | IRS |
| 990-N for 2020 Officer: Susan Wagner | December 31, 2020 | ≤ $50,000 receipts | – | – | e-Postcard |
| 990-N for 2019 Officer: Joyce Willard-Williford | December 31, 2019 | ≤ $50,000 receipts | – | – | e-Postcard |
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 84-3711526).
Questions about NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED
- What is the EIN of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED?
- The employer identification number (EIN) of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED is 84-3711526.
- Is NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2020.
- Are donations to NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED 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 NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED last file with the IRS?
- The latest return in the IRS public files is the 990-EZ for the year ended December 2025.
- Who is the principal officer of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED?
- The 990-N for 2020 names Susan Wagner.
- Who are the officers and directors of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED?
- The 990-EZ for the year ended December 31, 2025 lists 9 people; 0 received compensation from the organization.
- How much revenue does NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED have?
- On its 990-EZ for the year ended December 31, 2025 it reported revenue of $64,649, expenses of $56,566 and total assets of $96,171 at year end.
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