Hereditary Disease Foundation
- Assets
- $15.5m
- Revenue
- $4.1m
- Investments
- $0.0
- Employees
- 3
- Location
- New York, NY
- Founding
- 06/1974
- Data as of
- 12/2020
- EIN
- 23-7376197
Organization Overview
Hereditary Disease Foundation is located in New York, NY. The organization was established in 1974. 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 12/2020, Hereditary Disease Foundation employed 3 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Hereditary 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 12/2020, Hereditary Disease Foundation generated $4.1m in total revenue. This represents relatively stable growth, over the past 6 years the organization has increased revenue by an average of 9.5% each year. All expenses for the organization totaled $2.5m during the year ending 12/2020. While expenses have increased by 4.9% per year over the past 6 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 Disease Foundation has awarded 42 individual grants totaling $3,773,550. 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
2020
Describe the Organization's Mission:
Part 3 - Line 1
TO FUND INNOVATIVE RESEARCH TOWARDS CURING HUNTINGTON'S DISEASE AND IMPACTING OTHER BRAIN DISORDERS.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE HEREDITARY DISEASE FOUNDATION COMMEMORATES ITS 52ND YEAR BY MAKING AN EVEN GREATER IMPACT TOWARD DEVELOPING NOVEL THERAPEUTICS AND CURES. WE HAVE PUT IN PLACE STRATEGIES AND NEW GRANT FUNDING PROGRAMS TO MAXIMIZE OUR EFFECTIVENESS. WE HAVE BEEN FUNDING CATALYTIC AND PARADIGM-CHANGING RESEARCH SINCE OUR BIRTH - INCLUDING IDENTIFYING THE HUNTINGTON'S DISEASE MARKER IN 1983 AND THE HD GENE IN 1993, AND SUPPORTING GENE SILENCING APPROACHES SINCE 2002. WE WANT TO CONTINUE TO MAKE AN IMPACT BY FUNDING RESEARCH THAT PUSHES THE ENVELOPE.THE HEREDITARY DISEASE FOUNDATION PROVIDES FUNDING FOR RESEARCH THAT ADVANCES THE DISCOVERY AND DEVELOPMENT OF TREATMENTS FOR HUNTINGTON'S DISEASE AND OTHER BRAIN DISORDERS. WE ARE PASSIONATE ABOUT FUNDING AND THE FOUNDATION INTENDS TO USE THE ENDOWMENT FUNDS FOR ITS SCIENTIFIC ACTIVITIES WHICH INCLUDES PROVIDING GRANTS TO FUND SCIENTIFIC RESEARCH TO FURTHER THE UNDERSTANDING OF, AND TO DEVELOP DIAGNOSTICS AND THERAPEUTICS FOR NEURODEGENERATIVE DISEASES, INCLUDING HUNTINGTON'S DISEASE. THE HEREDITARY DISEASE FOUNDATION FUNDS THE MOST INNOVATIVE, CREATIVE AND PARADIGM-CHANGING RESEARCH POSSIBLE. THE DATA GENERATED WITH HDF FUNDING OFTEN ALLOWS RESEARCHERS TO GET INITIAL FINDINGS THAT HELP THEM APPLY SUCCESSFULLY FOR LARGER, LONG-TERM FUNDING FROM OTHER FUNDING AGENCIES, INCLUDING THE NATIONAL INSTITUTES OF HEALTH. THE FOUNDATION'S CURRENT FOCUS IS ON:1) MODIFIER STUDIES - ON DNA REPAIR PATHWAYS, PROTEIN DEGRADATION AND OTHER MODIFIERS OF PHENOTYPE AND AGE OF ONSET.2) RESEARCH MECHANISMS OF HD NEUROGENERATION AND BIOMARKERS AND THERAPY FOR HD-INDUCED NEURODEGENERATION.TYPE OF FUNDING:THE BASIC RESEARCH GRANTS PROGRAM: SUPPORTS PROJECTS CONTRIBUTING TO IDENTIFYING AND UNDERSTANDING THE FUNDAMENTAL DEFECTS IN HUNTINGTON'S DISEASE. POSTDOCTORAL FELLOWSHIPS: THESE POSTDOCTORAL FELLOWSHIPS ARE INTENDED TO CULTIVATE INTEREST IN HUNTINGTON'S DISEASE RESEARCH BY BRIGHT YOUNG SCIENTISTS. FELLOWSHIPS ARE GRANTED TO THOSE WHO POSSESS IMAGINATION, RIGOR, CREATIVITY AND SPIRIT TO PUSH FORWARD TOWARD A CURE FOR HD AND ENSURE THAT THESE LEARNING CAN BE APPLIED TO OTHER BRAIN DISEASES.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Meghan Donaldson CEO | OfficerTrustee | 30 | $110,000 |
Travis Carey CFO | Officer | 3 | $15,030 |
Nancy Wexler PHD President | OfficerTrustee | 7 | $0 |
Alice Wexler PHD Secretary | OfficerTrustee | 1 | $0 |
Anne Young MD PHD Vice Chair | OfficerTrustee | 1 | $0 |
David Zwally Chair | OfficerTrustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $82,760 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $3,571,436 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $3,654,196 |
| Total Program Service Revenue | $0 |
| Investment income | $262,035 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $125,628 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $4,059,819 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $1,263,008 |
| Grants and other assistance to domestic individuals. | $100,000 |
| Grants and other assistance to Foreign Orgs/Individuals | $419,772 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $125,030 |
| Compensation of current officers, directors, key employees. | $48,030 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $172,000 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $46,030 |
| Payroll taxes | $21,546 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $68,000 |
| Fees for services: Investment Management | $67,303 |
| Fees for services: Other | $100,735 |
| Advertising and promotion | $0 |
| Office expenses | $8,754 |
| Information technology | $17,368 |
| Royalties | $0 |
| Occupancy | $53,700 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $8,646 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $19,605 |
| Insurance | $7,170 |
| All other expenses | $0 |
| Total functional expenses | $2,519,661 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $272,171 |
| Savings and temporary cash investments | $2,379,491 |
| Pledges and grants receivable | $416,443 |
| 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 | $9,868 |
| Net Land, buildings, and equipment | $44,817 |
| Investments—publicly traded securities | $12,384,273 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $15,507,063 |
| Accounts payable and accrued expenses | $13,170 |
| Grants payable | $1,768,438 |
| 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 | $1,781,608 |
| Net assets without donor restrictions | $3,139,960 |
| Net assets with donor restrictions | $10,585,495 |
| 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 | $15,507,063 |
Grants Awarded
Over the last fiscal year, Hereditary Disease Foundation has awarded $1,263,008 in support to 13 organizations.
| Grant Recipient | Amount |
|---|---|
New York, NY | | $150,000 |
UT SOUTHWESTERN MEDICALCENTER | | | $137,036 |
New York, NY | | $129,056 |
Somerville, MA | | $126,536 |
Shrewsbury, MA | | $120,380 |
New York, NY | | $75,000 |
Grants Recieved
Over the last fiscal year, we have identified 18 grants that Hereditary Disease Foundation has recieved totaling $525,544.
| Awarding Organization | Amount |
|---|---|
Robert C Baker Family Foundation New York, NY PURPOSE: TO FURTHER DONEES EXEMPT PURPOSE | $250,000 |
Alexander & Jane Boyd Ta Fdn Buffalo, NY PURPOSE: MEDICAL | $75,000 |
Fox Family Foundation Cabin John, MD PURPOSE: GENERAL FUND | $50,000 |
Harry A Lieberman Foundation Philadelphia, PA PURPOSE: MEDICAL | $30,000 |
The Seattle Foundation Seattle, WA PURPOSE: TO PROVIDE SUPPORT FOR THE NANCY S WEXLER DISCOVERY FUND | $25,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $21,650 |
Endowment Analysis
| Beg. Balance | $9,703,171 |
| Earnings | $1,026,040 |
| Other Expense | $485,159 |
| Ending Balance | $10,244,052 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
The National Hemophilia Foundation New York, NY | $46,786,068 | $26,439,522 |
The Foundation For Embryonic Competence Inc Basking Ridge, NJ | $27,223,706 | $15,272,541 |
Hauptman-Woodward Medical Research Institute Inc Buffalo, NY | $26,101,769 | $9,359,091 |
Fshd Society Randolph, MA | $6,079,315 | $3,508,920 |
Hearing Health Foundation New York, NY | $12,344,240 | $5,730,095 |
Center For Human Genetics Inc Cambridge, MA | $9,835,244 | $2,410,975 |
Hereditary Disease Foundation New York, NY | $15,507,063 | $4,059,819 |
Cerebral Palsy Alliance Research Foundation New York, NY | $1,906,191 | $2,233,194 |
Research Fund For Cystic Fibrosis Inc Oradell, NJ | $1,621,345 | $155,788 |
International Federation Of Ferility Societies Mt Royal, NJ | $613,386 | $443,575 |
Everyone Reading Inc Brooklyn, NY | $262,422 | $247,442 |
Fetal Medicine Foundation Inc Fort Lee, NJ | $116,347 | $189,262 |