National Fabry Disease Foundation
- Assets
- $685.8k
- Revenue
- $572.2k
- Investments
- $0.0
- Employees
- 2
- Location
- Hillsborough, NC
- Founding
- 11/2006
- Data as of
- 05/2022
- EIN
- 20-2944028
Organization Overview
National Fabry Disease Foundation is located in Hillsborough, NC. The organization was established in 2006. According to its NTEE Classification (G19) the organization is classified as: Support N.E.C., under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 05/2022, National Fabry Disease Foundation employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Fabry Disease Foundation is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 05/2022, National Fabry Disease Foundation generated $572.2k in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 5.4% each year. All expenses for the organization totaled $228.5k during the year ending 05/2022. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
TO ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND TREATED IN TIME TO AVOID A DIMINISHED QUALITY-OF-LIFE AND LIFE- THREATENING CONSEQUENCES; TO PROVIDE EDUCATION AND AWARENESS; AND TO PROMOTE RESEARCH TO IMPROVE THE MANAGEMENT AND TREATMENT OF FABRY DISEASE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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 CHILDREN AND ADULTS WITH FABRY DISEASE ARE RECOGNIZED AND DIAGNOSED AT THE EARLIEST AGE POSSIBLE TO RECEIVE APPROPRIATE MANAGEMENT AND TREATMENT OF THEIR DISEASE. OUR PUBLIC EDUCATION PROGRAM IS DESIGNED TO REACH UNDIAGNOSED INDIVIDUALS BY RAISING AWARENESS OF THE SYMPTOMS OF FABRY DISEASE. WE PROVIDED 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, VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION AND EDUCATIONAL CALENDAR, A FABRY COMMUNITY LANDSCAPE DOCUMENT, FREQUENT EDUCATIONAL POSTS ON OUR FACE BOOK PAGE OF ABOUT 4,000 FOLLOWERS, PERIODIC TWEETS ON OUR TWITTER PAGE, OUR PERIODIC FABRY FOCUS E-NEWSLETTER, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE ARE IN CONTACT WITH OVER 1,300 ADULTS WITH FABRY DISEASE BY EMAIL. REPORTS FROM OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM PROVIDES INVALUABLE INFORMATION TO INFORM PATIENTS AND PHYSICIANS AS WELL AS PROVIDING INSIGHTS TO STIMULATE ADDITIONAL RESEARCH. FOR APRIL FABRY DISEASE AWARENESS MONTH, WE INCREASE AWARENESS TO PROVIDE DAILY SOCIAL MEDIA AND E-NEWSLETTER EDUCATIONAL UPDATES. PUBLISHED LITERATURE INDICATES 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE THAN ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT.
COMMUNITY SUPPORT: PROVIDE SUPPORT AND ASSISTANCE TO INDIVIDUALS WITH FABRY DISEASE AND THEIR FAMILIES. OUR COMMUNITY SUPPORT PROGRAM IS DIRECTED TO PEOPLE LIVING WITH FABRY DISEASE AND THEIR FAMILIES. WE PROVIDED DAILY PHONE CALLS, EMAIL AND WRITTEN CORRESPONDENCE TO SUPPORT INDIVIDUALS AND FAMILIES WITH FABRY DISEASE. WE PROVIDED PATIENTS AND FAMILIES A FREE 24/7 HOTLINE FOR COUNSELING AND REFERRALS, PURCHASED MANY JOURNAL ARTICLES TO SHARE WITH THE COMMUNITY, 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.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Gerald Walter Chair | OfficerTrustee | 40 | $109,200 |
Derek Halberg Vice Chair | OfficerTrustee | 1 | $0 |
Melanie Wilson Treasurer | OfficerTrustee | 1 | $0 |
Tracy Myatt Secretary | OfficerTrustee | 1 | $0 |
Douglas Warnock Director | Trustee | 1 | $0 |
Steven Rothman Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $572,188 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $572,188 |
| Total Program Service Revenue | $0 |
| Investment income | $0 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $572,188 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $25,165 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $112,476 |
| Compensation of current officers, directors, key employees. | $3,374 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $3,526 |
| Pension plan accruals and contributions | $363 |
| Other employee benefits | $0 |
| Payroll taxes | $8,623 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $2,750 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $23,598 |
| Advertising and promotion | $0 |
| Office expenses | $7,194 |
| Information technology | $26,963 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $200 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $10,900 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $5 |
| Insurance | $1,390 |
| All other expenses | $297 |
| Total functional expenses | $228,527 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $629,928 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $404 |
| Other assets | $55,486 |
| Total assets | $685,818 |
| Accounts payable and accrued expenses | $0 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $0 |
| Net assets without donor restrictions | $685,818 |
| Net assets with donor restrictions | $0 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $685,818 |
Grants Recieved
Over the last fiscal year, we have identified 3 grants that National Fabry Disease Foundation has recieved totaling $25,090.
| Awarding Organization | Amount |
|---|---|
Network For Good Inc Washington, DC PURPOSE: UNRESTRICTED | $20,040 |
Kleinschmidt Family Foundation Vero Beach, FL PURPOSE: UNRESTRICTED | $5,000 |
Chubb Charitable Foundation Philadelphia, PA PURPOSE: MATCHING GIFTS | $50 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Allergy And Asthma Network-Mothers Of Asthmatics Inc Vienna, VA | $1,791,033 | $3,839,428 |
Aids Response Effort Inc Winchester, VA | $1,247,768 | $2,198,362 |
Cure Jm Foundation Leesburg, VA | $2,112,799 | $1,824,036 |
Sunshine On A Ranney Day Incorporated Roswell, GA | $768,956 | $1,710,820 |
Jack And Jill Late Stage Cancerfoundation Inc Atlanta, GA | $1,791,868 | $1,449,888 |
Oasis Nc Wilmington, NC | $179,774 | $688,481 |
Diabetes Family Connection Raleigh, NC | $94,428 | $493,490 |
Healing Strong Inc Cumming, GA | $143,214 | $411,068 |
Hearts Everywhere Reaching Out For Children Inc Roswell, GA | $396,352 | $331,543 |
Untamed Spirit Therapeutic And Educational Program Virginia Beach, VA | $9,360 | $259,781 |
Brca Foundation Inc Augusta, GA | $377,797 | $213,096 |
National Fabry Disease Foundation Hillsborough, NC | $685,818 | $572,188 |