Hereditary Neuropathy Foundation Inc
- Assets
- $1.6m
- Revenue
- $1.3m
- Investments
- $0.0
- Employees
- 2
- Location
- New York City, NY
- Founding
- 01/2001
- Data as of
- 06/2022
- EIN
- 13-4137654
Organization Overview
Hereditary Neuropathy Foundation Inc is located in New York City, NY. The organization was established in 2001. According to its NTEE Classification (H12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Medical Research and related organizations. As of 06/2022, Hereditary Neuropathy Foundation Inc employed 2 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Hereditary Neuropathy Foundation Inc 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 06/2022, Hereditary Neuropathy Foundation Inc generated $1.3m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 7.9% each year. All expenses for the organization totaled $759.4k during the year ending 06/2022. While expenses have increased by 8.4% 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.
Since 2015, Hereditary Neuropathy Foundation Inc has awarded 20 individual grants totaling $672,267. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
HNF, INC., A NON-PROFIT DEDICATED TO SUPPORTING PROJECTS THROUGH THE THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) PROGRAM, A COLLABORATIVE EFFORT WITH ACADEMIA, GOVERNMENT AND INDUSTRY, TO DEVELOP TREATMENTS FOR CMT.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) PROGRAM FOCUSES ON FUNDING RESEARCH GRANTS AND VENTURE PHILANTHROPY THAT SUPPORTS THE DEVELOPMENT OF DRUG DISCOVERY, TRANSLATION, AND CLINICAL TRIAL READINESS. THROUGH PARTNERSHIPS WITH ACADEMIC UNIVERSITIES, CONTRACT RESEARCH ORGANIZATIONS, AND INDUSTRY LEADERS IN THE HEALTHCARE, BIOTECH, AND PHARMACEUTICAL SECTOR; HNF AIMS TO DEVELOP TREATMENTS AND CURES FOR CMT. HNF'S PATIENT REGISTRY, GLOBAL REGISTRY FOR INHERITED NEUROPATHIES (GRIN) COLLECTS ROBUST NATURAL HISTORY STUDIES FOR ALL SUBTYPES OF CMT AND IS THE ONLY CMT DATABASE THAT COLLECTS BOTH PATIENT-REPORTED AND CLINICAL DATA WHICH IS ESSENTIAL TO DRUG DISCOVERY.
THE MOVEMENT IS MEDICINE(MIM) PROGRAM PLAYS AN ESSENTIAL ROLE BY PROVIDING RESOURCES TO IMPROVE PHYSICAL AND MENTAL WELLBEING FOR PEOPLE LIVING WITH CMT. MIM FITNESS AMBASSADORS PROVIDE HNF MEMBERS FREE WEEKLY LIVE CLASSES TO HELP INCREASE PATIENTS' STRENGTH, BALANCE, AND OVERALL FITNESS LEVELS.
HNF CONDUCTS CMT-CONNECT WEBINARS FOR PATIENTS, THEIR FAMILIES AND OTHER STAKEHOLDERS TO EMPOWER, EDUCATE AND CONNECT. HNF PUBLISHES CMT UPDATE QUARTERLY NEWSLETTERS AND DISSEMINATES ADDITIONAL EDUCATIONAL COLLATERAL (IE.THRIVE GUIDE, ABC OF AFO'S, CENTERS OF EXCELLENCE, ETC.) TO SUPPORT THE CMT COMMUNITY. HNF'S ONLINE PRESENCE (WWW.HNF-CURE.ORG) AND (WWW.INSPIRE.COM/GROUPS/CHARCOT-MARIE-TOOTH-CMT/) OFFERS RESOURCES TO HELP PATIENTS MANAGE THEIR CMT, CONNECT WITH OTHERS AND INCREASE AWARENESS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Allison Moore Founder And Chief Executiv | OfficerTrustee | 50 | $0 |
Joy Andal Kaye Board Member | Trustee | 5 | $0 |
Kara Sprague Treasurer | OfficerTrustee | 5 | $0 |
Matthew Downing Chairman | OfficerTrustee | 5 | $0 |
Debi Houilares Board Member | Trustee | 5 | $0 |
Kerin Reilly Board Member | Trustee | 5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $266,652 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $892,434 |
| Noncash contributions included in lines 1a–1f | $122,632 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,159,086 |
| Total Program Service Revenue | $0 |
| Investment income | $1,424 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $142,799 |
| Net Income from Fundraising Events | -$44,848 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,259,879 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $299,559 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $73,000 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $60,000 |
| Compensation of current officers, directors, key employees. | $6,000 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $53,077 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $44,395 |
| Payroll taxes | $10,043 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $19,137 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $165,083 |
| Advertising and promotion | $0 |
| Office expenses | $11,129 |
| Information technology | $4,892 |
| Royalties | $0 |
| Occupancy | $265 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $10,480 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $0 |
| All other expenses | $2,866 |
| Total functional expenses | $759,374 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,134,645 |
| Savings and temporary cash investments | $8,568 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $75,000 |
| 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 | $108,840 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $300,000 |
| Total assets | $1,627,053 |
| Accounts payable and accrued expenses | $5,589 |
| 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 | $5,589 |
| Net assets without donor restrictions | $561,835 |
| Net assets with donor restrictions | $1,059,629 |
| 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 | $1,627,053 |
Grants Awarded
Over the last fiscal year, Hereditary Neuropathy Foundation Inc has awarded $259,000 in support to 5 organizations.
| Grant Recipient | Amount |
|---|---|
THE UNIVERSITY OF MIAMI PURPOSE: RESEARCH | $40,000 |
THE GENESIS PROJECT PURPOSE: RESEARCH | $25,000 |
CAPTURE PROOF INC PURPOSE: RESEARCH | $34,000 |
BURKE NEUROLOGICAL INSTITUTE PURPOSE: RESEARCH | $10,000 |
RAREBASE PBC PURPOSE: RESEARCH | $150,000 |