National Fragile X Foundation
- Assets
- $1.5m
- Revenue
- $1.7m
- Investments
- $0.0
- Employees
- 8
- Location
- Mclean, VA
- Founding
- 08/1983
- Data as of
- 12/2021
- EIN
- 84-0960471
Organization Overview
National Fragile X Foundation is located in Mclean, VA. The organization was established in 1983. According to its NTEE Classification (H20) the organization is classified as: Birth Defects & Genetic Diseases Research, under the broad grouping of Medical Research and related organizations. As of 12/2021, National Fragile X Foundation employed 8 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Fragile X 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 12/2021, National Fragile X Foundation generated $1.7m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 4.0% each year. All expenses for the organization totaled $1.5m during the year ending 12/2021. While expenses have increased by 2.4% per year over the past 7 years. They've been increasing with an increasing level of total revenue. 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
TO PROVIDE UNWAVERING SUPPORT FOR EVERY FAMILY AFFECTED BY FRAGILE X WHILE RELENTLESSLY PURSUING A CURE.
Describe the Organization's Program Activity:
Part 3 - Line 4a
EDUCATION AND SUPPORT - THE NFXF PROVIDES PERSONALIZED SUPPORT, INFORMATION AND REFERRALS TO INDIVIDUALS AND FAMILIES ON THE MULTITUDE OF ISSUES THEY FACE, INCLUDING DIAGNOSIS, GENETICS, BEHAVIOR, TREATMENTS, EDUCATIONAL PLANNING, EMPLOYMENT AND ADULT ISSUES. THE NFXF ORGANIZES REGIONAL, INTERNATIONAL EDUCATIONAL CONFERENCES AND WEBINARS FOR FAMILIES AND PROFESSIONALS ABOUT FX DISORDERS TO HELP FAMILIES COPE AND OVERCOME THE DAILY CHALLENGES OF LIVING WITH FX.
RESEARCH GRANTS - THE NFXF FUNDS TWO MAJOR RESEARCH STRATEGIES. THE NFXF BIOBANK, WHEREBY BIOLOGICAL SAMPLES ARE COLLECTED FROM VOLUNTEER PARTICIPANTS LIVING WITH FRAGILE X. THESE SAMPLES, COMBINED WITH CLINICAL DATA FROM THESE SAME PARTICIPANTS WILL BE USED TO CREATE UNIQUE NFXF RESEARCH READY MATERIALS. RESEARCHERS CAN THEN USE THESE MATERIALS TO IDENTIFY CORRELATIONS BETWEEN BEHAVIOR AND MEDICAL CONDITIONS, KNOWN AS BIOMARKERS, ALLOWING PHARMACEUTICALS TO TARGET THE UNDERLYING BIOLOGICAL MECHANISM FOR TREATMENT OR CURES. THE NFXF ALSO FUNDS SUMMER STUDENT FELLOWSHIPS TO PROMOTE THE DEVELOPMENT OF YOUNGER SCIENTISTS IN THE FIELD.
COMMUNITY SUPPORT NETWORK - THE NFXF ORGANIZES AND SUPPORTS A VIBRANT AND DEDICATED NETWORK OF VOLUNTEER-LED CHAPTERS ACROSS THE U.S. THESE CHAPTERS DELIVER THE NFXF MISSION ON A LOCAL LEVEL. A WRITTEN CHAPTER AGREEMENT WAS DEVELOPED TO FORMALIZE AFFILIATE VOLUNTEER GROUPS AS NFXF CHAPTERS EFFECTIVE JANUARY 2018.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Linda Sorensen Executive Director | Officer | 40 | $164,032 |
Evan Davis Vice President | OfficerTrustee | 2 | $0 |
Abby Gaunt Secretary | OfficerTrustee | 2 | $0 |
Emily Mack President | OfficerTrustee | 2 | $0 |
Rajat Sarup Treasurer | OfficerTrustee | 2 | $0 |
Anthony Fasciano Director | Trustee | 1 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Pri Inc Website Content And Maintenance | 12/30/21 | $110,544 |
Neosystems Accounting And Management | 12/30/21 | $102,642 |
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 | $1,385,797 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,385,797 |
| Total Program Service Revenue | $253,483 |
| Investment income | $844 |
| 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 | $12,594 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,652,718 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $2,500 |
| Grants and other assistance to domestic individuals. | $16,525 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $164,226 |
| Compensation of current officers, directors, key employees. | $16,423 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $493,111 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $43,092 |
| Payroll taxes | $53,225 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $98,557 |
| Fees for services: Lobbying | $60,000 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $419,610 |
| Advertising and promotion | $30,746 |
| Office expenses | $14,159 |
| Information technology | $11,520 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $14,029 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $1,204 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $13,493 |
| Insurance | $15,643 |
| All other expenses | $0 |
| Total functional expenses | $1,506,649 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $837,137 |
| Savings and temporary cash investments | $250,460 |
| Pledges and grants receivable | $146,576 |
| Accounts receivable, net | $5,000 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $4,820 |
| Prepaid expenses and deferred charges | $13,456 |
| Net Land, buildings, and equipment | $3,153 |
| Investments—publicly traded securities | $278,635 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $1,539,237 |
| Accounts payable and accrued expenses | $61,863 |
| Grants payable | $0 |
| Deferred revenue | $10,877 |
| 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 | $150,000 |
| Other liabilities | $154 |
| Total liabilities | $222,894 |
| Net assets without donor restrictions | $1,076,499 |
| Net assets with donor restrictions | $239,844 |
| 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 | $1,539,237 |
Grants Recieved
Over the last fiscal year, we have identified 17 grants that National Fragile X Foundation has recieved totaling $169,290.
| Awarding Organization | Amount |
|---|---|
Cascade Foundation Rockport, ME PURPOSE: MEDICAL RESEARCH | $50,000 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $35,255 |
Cascade Foundation Rockport, ME PURPOSE: MEDICAL RESEARCH | $25,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $24,522 |
Schoenith Foundation Dallas, TX PURPOSE: UNRESTRICTED GENERAL | $12,000 |
Mcgowan Family Foundation Inc Omaha, NE PURPOSE: Disease, Disorder, Medical | $7,500 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
American Society Of Human Genetics Rockville, MD | $24,149,284 | $8,094,459 |
Community Health Interventions And Sickle Cell Agency Inc Fayetteville, NC | $519,573 | $2,014,356 |
Spinal Research Foundation Reston, VA | $4,971,083 | $1,609,882 |
National Fragile X Foundation Mclean, VA | $1,539,237 | $1,652,718 |
Rilite Foundation Charlottesville, VA | $256,412 | $479,471 |
Parkinson Association Of The Carolinas Charlotte, NC | $2,104,348 | $268,064 |
Childrens Roads To Recovery Inc Baltimore, MD | $30,652 | $19,883 |
International Neurosurgery Education And Research Foundation Raleigh, NC | $274,447 | $152,970 |
Peoples Clinic Foundation Inc Morehead, KY | $113,820 | $0 |
Pediatric Research And Advocacy Initiative Onley, VA | $131,920 | $12,255 |
Advance The Cure Knoxville, TN | $24,902 | $0 |
Clara Inspired Midlothian, VA | $44,408 | $33,330 |