Nonprofit · EIN 20-2944028
NATIONAL FABRY DISEASE FOUNDATION
Tax-exempt · HILLSBOROUGH, NC 27278
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| May 31, 2025 | 990 | $592,005 | $738,955 | -$146,950 | $269,505 | $2,608 | $266,897 |
| May 31, 2024 | 990 | $575,301 | $682,510 | -$107,209 | $413,847 | $0 | $413,847 |
Financial details: 990 for the year ended May 31, 2025
Revenue
- Contributions, gifts and grants
- $581,175
- Program service revenue
- $0
- Investment income
- $10,830
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $131,994
- Compensation of officers, directors and key employees
- $127,508
- Other salaries and wages
- $161,065
- Salaries, compensation and benefits (total)
- $325,165
- Professional fundraising fees
- $0
- Accounting fees
- $3,811
- Travel
- $50,049
- Depreciation
- $1,323
- Program services (functional)
- $697,072
- Management and general (functional)
- $33,049
- Fundraising (functional)
- $8,834
Balance sheet and other
- Total assets, start of year
- $413,847
- Total assets, end of year
- $269,505
- Total liabilities, end of year
- $2,608
- Net assets, end of year
- $266,897
- Land, buildings and equipment
- $1,977
- Net assets without donor restrictions
- $266,897
- Gross receipts
- $592,005
- Employees
- 4
- Volunteers
- 63
- Year formed
- 2005
- State of legal domicile
- VA
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 May 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| GERALD WALTER | CHAIR Trustee or director, Officer | 40 | $122,499 | $3,675 |
| CASEY A MCKENNA | SENIOR PROGRAM MANAGER Highest-paid employee | 40 | $101,136 | $5,000 |
| DEREK HALBERG | VICE CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| TRACY MYATT | SECRETARY Trustee or director, Officer | 1 | $0 | $0 |
| MELANIE WILSON | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| ELIZABETH GAFFIN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| STEVEN ROTHMAN | DIRECTOR Trustee or director | 1 | $0 | $0 |
990 for the year ended May 31, 2024: 6 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| GERALD WALTER | CHAIR Trustee or director, Officer | 40 | $114,785 | $3,550 |
| DEREK HALBERG | VICE CHAIR Trustee or director, Officer | 1 | $0 | $0 |
| TRACY MYATT | SECRETARY Trustee or director, Officer | 1 | $0 | $0 |
| MELANIE WILSON | TREASURER Trustee or director, Officer | 1 | $0 | $0 |
| ELIZABETH GAFFIN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| STEVEN ROTHMAN | DIRECTOR Trustee or director | 1 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 144 E KING ST UNIT 1419, HILLSBOROUGH, NC 27278-0450
- In care of
- % GERALD I WALTER
- Principal officer (990 for 2024)
- GERALD WALTER, 144 E KING ST 1419, HILLSBOROUGH, NC 27278
- Signed the 990
- GERALD WALTER, BOARD CHAIR
- Phone
- (919) 732-2799
- Website
- HTTP://WWW.FABRYDISEASE.ORG
- Return prepared by
- BLACKMAN & SLOOP ADVISORS INC
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 FAMILIES; AND TO CONDUCT AND PROMOTE RESEARCH TO IMPROVE MANAGEMENT AND TREATMENT FOR FABRY DISEASE.
Program accomplishments
- EDUCATION AND AWARENESS: EARLY INTERVENTION IMPROVES MANY ADVERSE QUALITY-OF-LIFE SYMPTOMS AND EXTENDS PATIENTS' LIFE EXPECTANCY. OUR FAMILY AND PHYSICIAN EDUCATION PROGRAMS HELP TO ENSURE THAT CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST POSSIBLE AGE, ALLOWING FOR APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH INDIVIDUALS WHO ARE UNDIAGNOSED WITH FABRY DISEASE BY RAISING AWARENESS OF THE SYMPTOMS ASSOCIATED WITH THIS CONDITION. WE CONTINUED TO PROVIDE EDUCATION AND AWARENESS ABOUT FABRY DISEASE IN VARIOUS FORMS, SUCH AS OUR ROBUST EDUCATIONAL WEBSITE AT WWW.FABRYDISEASE.ORG; OUR ANNUAL FAMILY EDUCATION CONFERENCE; MONTHLY VIRTUAL FAMILY EDUCATION MEETINGS (OUR 60 EDUCATIONAL VIDEOS LISTED IN A VIDEO INDEX FLYER), VARIOUS MATERIALS SUCH AS AN A FABRY TESTING FLYER, A CHART OF PRIMARY FINANCIAL ASSISTANT PROGRAMS FOR FABRY, A MENTAL HEALTH PROGRAMS RESOURCE FOR FABRY, FLYER WITH TIPS FOR PEOPLE RECEIVING ENZYME REPLACEMENT AND CHAPERONE THERAPIES, AND A HOT DAYS WITH FABRY FLYER, OUR FACEBOOK PAGE OF MORE THAN 4,300 FOLLOWERS, PERIODIC TWEETS ON OUR X PAGE, OUR PERIODIC FABRY FOCUS E-NEWSLETTER, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE HAVE EXPANDED OUR SOCIAL MEDIA EDUCATION CAMPAIGN WITH INSTAGRAM, LINKEDIN, AND TIKTOK. WE ARE IN CONTACT WITH OVER 3,000 FABRY FOCUS E-NEWLETTER SUBSCRIBERS. REPORTS FROM OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM PROVIDE INVALUABLE INFORMATION TO INFORM PATIENTS AND PHYSICIANS AND PROVIDE INSIGHTS TO STIMULATE ADDITIONAL RESEARCH. WE INCREASE AWARENESS FOR APRIL FABRY DISEASE AWARENESS MONTH BY PROVIDING DAILY SOCIAL MEDIA AND E-NEWSLETTER EDUCATIONAL UPDATES. PUBLISHED LITERATURE INDICATES 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT.Expenses $484,454 · grants $131,994
- COMMUNITY SUPPORT: THE NFDF COMMUNITY SUPPORT PROGRAM AND ASSISTANCE PROGRAM IS PROVIDED TO PEOPLE WITH FABRY DISEASE AND THEIR FAMILIES. THE NFDF HOSTED ITS 13TH ANNUAL FABRY FAMILY CAMP AT VICTORY JUNCTION IN RANDLEMAN, NC. WE PROVIDED DAILY PHONE CALLS, EMAILS, AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED PATIENTS AND FAMILIES WITH A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS AND MANY INNOVATIVE RESOURCES TO HELP PATIENTS/FAMILIES NAVIGATE DISEASE TESTING, FINANCIAL MANAGEMENT ASSISTANCE, MENTAL HEALTH ASSISTANCE, AND OTHER NEEDS. WE PROVIDED TRANSPORTATION AND OTHER ASSISTANCE TO ATTEND FABRY EDUCATIONAL MEETINGS, PROVIDED FINANCIAL ASSISTANCE FOR ONE-TIME OR SHORT-TERM NEEDS NOT COVERED BY OTHER PROGRAMS, AND CONTINUED TO PROVIDE MY-HEALTH-HANDBOOK-KITS FOR EMERGENCY SITUATIONS. WE FACILITATED TESTING FOR DIAGNOSES AND ACCESS TO TREATMENT. WE CONTINUED TO ADD FABRY SPECIALISTS TO OUR FIND-A-FABRY-SPECIALIST SEARCHABLE DATABASE ON OUR WEBSITE.Expenses $212,618
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 May, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | May 31, 2026 | October 15, 2026 | Not on file |
| 2024 | May 31, 2025 | October 15, 2025 | 990 on file |
| 2023 | May 31, 2024 | October 15, 2024 | 990 on file |
IRS record
- EIN
- 20-2944028
- 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
- 2006
- Accounting year ends
- May
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Voluntary health associations and medical disciplines (G198)
- Assets (IRS master file)
- $269,505
- Income (IRS master file)
- $592,005
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | May 2025 | $592,005 | $738,955 | $269,505 | XML |
| 990 | May 2024 | $575,301 | $682,510 | $413,847 | XML |
| 990 | May 2023 | $307,957 | $472,698 | $521,056 | IRS |
| 990 | May 2022 | – | – | – | IRS |
| 990 | May 2021 | – | – | – | IRS |
| 990 | May 2019 | – | – | – | IRS |
| 990 | May 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 20-2944028).
Questions about NATIONAL FABRY DISEASE FOUNDATION
- What is the EIN of NATIONAL FABRY DISEASE FOUNDATION?
- The employer identification number (EIN) of NATIONAL FABRY DISEASE FOUNDATION is 20-2944028.
- Is NATIONAL FABRY DISEASE FOUNDATION tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2006.
- Are donations to NATIONAL FABRY DISEASE FOUNDATION tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NATIONAL FABRY DISEASE FOUNDATION 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 NATIONAL FABRY DISEASE FOUNDATION due?
- The return for tax year 2025 (the year ending May 31, 2026) is due October 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NATIONAL FABRY DISEASE FOUNDATION last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended May 2025.
- Who is the principal officer of NATIONAL FABRY DISEASE FOUNDATION?
- The 990 for the year ended May 31, 2025 names GERALD WALTER.
- Who are the officers and directors of NATIONAL FABRY DISEASE FOUNDATION?
- The 990 for the year ended May 31, 2025 lists 7 people; 2 received compensation from the organization, the highest $122,499 (GERALD WALTER, CHAIR).
- How much revenue does NATIONAL FABRY DISEASE FOUNDATION have?
- On its 990 for the year ended May 31, 2025 it reported revenue of $592,005, expenses of $738,955 and total assets of $269,505 at year end.
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