National Fabry Disease Foundation
Donations deductibleNational Fabry Disease Foundation's network
6 people1 organisationi6 people and 1 organisation on this map.The large node is the subject of this page. Solid lines are what the register itself records (6). Violet dotted lines (1) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
6 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 6 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Gerald Walter Chair | Chair | 2023 | 3 yrs |
| Derek Halberg | Vice Chair | 2023 | 3 yrs |
| Elizabeth Gaffin | Director | 2018 | 8 yrs |
| Melanie Wilson | Treasurer | 2023 | 3 yrs |
| Steven Rothman | Director | 2018 | 8 yrs |
| Tracy Myatt | Company secretary | 2023 | 3 yrs |
Under 5 years5 to 6 years6 years or more
Officers and senior leadership
5 listediNamed in Part VII as officers, key employees or highest-compensated staff - not board members, shown for completeness.| Name | Title as filed | On the filings |
|---|---|---|
| Casey A McKenna | Senior Program Manager | 2025 |
| Derek Halberg | Vice Chair | since 2018 |
| Gerald Walter | Chair | since 2018 |
| Melanie Wilson | Treasurer | since 2018 |
| Tracy Myatt | Company secretary | since 2018 |
Pay and hours
year to 31 May 2025iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Gerald Walter | Chair | 40 | $122k | $4k | |
| Casey A McKenna | Senior Program Manager | 40 | $101k | $5k | |
| Derek Halberg | Vice Chair | 1 | $0 | ||
| Tracy Myatt | Secretary | 1 | $0 | ||
| Melanie Wilson | Treasurer | 1 | $0 | ||
| Elizabeth Gaffin | Director | 1 | $0 | ||
| Steven Rothman | Director | 1 | $0 |
About
- Legal name
- National Fabry Disease Foundation
- EIN
- 202944028
- Address
- 144 E King St Unit 1419, Hillsborough, NC, 27278-0450
- State
- North Carolina
- Mission
- To ensure that all individuals with fabry disease are identified, diagnosed and provided an opportunity for treatment in time to avoid a diminished quality-of-life and life-threatening consequences; to provide education and awareness to people with fabry disease and their families, to physicians, and to the public; to provide support and assistance to people with fabry disease and their... (as filed on the Form 990)
- Activity (NTEE)
- G198 Voluntary health associations and medical disciplines
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Voluntary Health Associations & Medical Disciplines
- Size band
- 4 (IRS master file code)
- Formed
- 2005
- Principal officer
- Gerald Walter (as named on the Form 990)
- IRS ruling date
- 1 November 2006
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 7, latest 2025
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsElizabeth Gaffin
≥8years on the filingsSteven Rothman
≥3years on the filingsGerald Walter
≥3years on the filingsDerek Halberg
Latest return
year to 31 May 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 May 2025. US dollars, as filed.- Total assets
- $270k
- Total liabilities
- $3k
- Net assets or fund balances
- $267k
- Contributions and grants received
- $581k
- Program service revenue
- $0
- Grants and similar paid out
- $132k
- Employees
- 4
- Volunteers
- 63
Filed finances
2 yearsiTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.| Tax year | Total revenue | Total expenses | Surplus or deficit |
|---|---|---|---|
| 2024 | $592k | $739k | Deficit $147k |
| 2023 | $575k | $683k | Deficit $107k |
As filed on the IRS Form 990. US dollars.
Grants paid
1 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| Fabry Support and Information Group | To support fabry newborn screening initiatives as a member of the lysosomal storage disease coalition. | $10k |