Hereditary Neuropathy Foundation Inc
- Assets
- $1.3m
- Revenue
- $637.1k
- Investments
- $0.0
- Employees
- 1
- Location
- New York City, NY
- Founding
- 01/2001
- Data as of
- 06/2021
- 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. 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 06/2021, Hereditary Neuropathy Foundation Inc generated $637.1k in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (2.1%) each year. All expenses for the organization totaled $679.4k during the year ending 06/2021. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Hereditary Neuropathy Foundation Inc has awarded 18 individual grants totaling $490,658. 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
2021
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 CONTINUES TO EXPAND PARTNERSHIPS WITHIN ACADEMIC UNIVERSITIES, CONTRACTED RESEARCH ORGANIZATIONS, AND WITH INDUSTRY LEADERS IN THE HEALTHCARE, BIOTECH AND PHARMACEUTICAL SECTOR TO DEVELOP THERAPIES FOR PEOPLE LIVING WITH CMT. HNF HAS ENHANCED THE PATIENT REGISTRY, GLOBAL REGISTRY FOR INHERITED NEUROPATHIES (GRIN) PROTOCOL TO COLLECT CLINICAL DATA POINTS USING AI TO MEASURE PROGRESSION AND/OR IMPROVEMENT OF PEOPLE LIVING WITH CMT. THE TRIAD COUNCIL, FORMERLY KNOWN AS THE MEDICAL AND SCIENTIFIC ADVISORY BOARD, MEETS QUARTERLY FOR UPDATES, DISCUSSIONS AND GUIDANCE ON HNF'S RESEARCH FUNDED PROGRAMS.
THE MOVEMENT IS MEDICINE(MIM) PROGRAM PLAYS AN ESSENTIAL ROLE BY PROVIDING RESOURCES TO IMPROVE PHYSICAL AND MENTAL WELL BEING FOR PEOPLE LIVING WITH CMT. SINCE COVID-19, HNF EXPANDED THE ANNUAL IN-PERSON MIM SUMMIT BY INCORPORATING A 1-DAY VIRTUAL SUMMIT IN PARTNERSHIP WITH HNF CMT CENTER OF EXCELLENCE, ADVENTHEALTH. IN ADDITION, THE LAUNCH OF THE MIM FITNESS AMBASSADOR PROGRAM, PROVIDES MEMBERS FREE WEEKLY LIVE CLASSES TO HELP INCREASE PATIENTS STRENGTH, BALANCE, AND OVERALL FITNESS LEVEL. THESE CLASSES ARE SPECIFICALLY CREATED FOR THOSE WITH DISABILITIES.
THE CMT-CONNECT PROGRAM SUPPORTS EDUCATIONAL AND ENRICHED ONLINE WEBINARS ALONG WITH IN-PERSON WORKSHOPS TO SUPPORT CMT PATIENTS, FAMILIES, CAREGIVERS AND THE STAKEHOLDER COMMUNITY. THESE INTERACTIVE SERIES ARE DESIGNED TO SHED LIGHT ON OUR COMMUNITIES' MOST IMPORTANT TOPICS. WE SEEK OUT WELLNESS EXPERTS, THOUGHTLEADERS, MEDICAL PROFESSIONALS, ADAPTIVE PROGRAMS, EMERGING TECHNOLOGIES, DISABILITY ADVOCATES, UPDATES ON RESEARCH AND CLINICAL TRIALS AND MORE! THE PROGRAM ADDRESSES THE EMOTIONAL, SOCIAL, ECONOMICAL, DIVERSE AND THE PHYSICAL EFFECTS OF CMT AS IT AIMS FOR A HOLISTIC APPROACH TOWARDS SELF ADVOCACY AND WELLNESS. CURRENTLY HNF HAS HOSTED OVER 30 WEBINARS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Courtney Hollett Executive Director | Officer | 40 | $60,000 |
Allison Moore Founder And Chief Executiv | OfficerTrustee | 50 | $0 |
Kara Sprague Treasurer | OfficerTrustee | 5 | $0 |
Matthew Downing Chairman | OfficerTrustee | 5 | $0 |
Brooke Warren Secretary | OfficerTrustee | 5 | $0 |
Joy Andal Kaye Board Member | Trustee | 5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Total Revenue from Contributions, Gifts, Grants & Similar | $648,242 |
| Investment income | $539 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | -$12,263 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $637,088 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $101,610 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $5,001 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $15,767 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $184,606 |
| Advertising and promotion | $4,974 |
| Office expenses | $11,891 |
| Information technology | $5,988 |
| Royalties | $0 |
| Occupancy | $9,753 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $1,895 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $0 |
| All other expenses | $0 |
| Total functional expenses | $679,388 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $828,286 |
| Savings and temporary cash investments | $10,761 |
| 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 |
| Investments—publicly traded securities | $156,607 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $300,000 |
| Total assets | $1,295,654 |
| Accounts payable and accrued expenses | $27,854 |
| 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 | $27,854 |
| Net assets without donor restrictions | $0 |
| 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 |
| Total liabilities and net assets/fund balances | $1,267,800 |
Grants Awarded
Over the last fiscal year, Hereditary Neuropathy Foundation Inc has awarded $250,214 in support to 7 organizations.
| Grant Recipient | Amount |
|---|---|
CAPTURE PROOF INC PURPOSE: RESEARCH | $89,500 |
THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN ANTONIO PURPOSE: RESEARCH | $75,004 |
Miami, FL PURPOSE: RESEARCH | $25,000 |
Philadelphia, PA PURPOSE: RESEARCH | $21,500 |
THE UNIVERSITY OF MIAMI PURPOSE: RESEARCH | $20,000 |
SAGE LABS PURPOSE: RESEARCH | $12,450 |
Grants Recieved
Over the last fiscal year, we have identified 3 grants that Hereditary Neuropathy Foundation Inc has recieved totaling $65,124.
| Awarding Organization | Amount |
|---|---|
Network For Good Inc Washington, DC PURPOSE: UNRESTRICTED | $39,970 |
Pledgeling Foundation Venice, CA PURPOSE: GENERAL | $18,266 |
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $6,888 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Pan-Massachusetts Challenge Inc Needham, MA | $4,238,156 | $66,009,480 |
Health Effects Institute Boston, MA | $12,526,721 | $12,481,645 |
The Association For Frontotemporal Degeneration King Of Prussia, PA | $44,796,969 | $12,057,958 |
Childrens Oncology Group Foundation Philadelphia, PA | $22,837,173 | $7,487,855 |
Hope For Depression Research Foundation New York, NY | $59,831,359 | $6,866,948 |
Israel Cancer Research Fund Inc New York, NY | $17,015,756 | $7,146,502 |
Life Science Cares Inc Cambridge, MA | $8,104,702 | $8,289,428 |
Haymakers For Hope Inc Wellesley, MA | $644,411 | $4,070,620 |
Fox Chase Cancer Center Foundation Philadelphia, PA | $63,333,365 | $6,307,847 |
The Progeria Research Foundation Inc Peabody, MA | $53,690,802 | $49,219,762 |
Improvecarenow Inc Essex, VT | $802,029 | $3,120,134 |
Dubai Harvard Foundation For Medical Research Inc Boston, MA | $15,096,309 | $431,547 |