Barth Syndrome Foundation Inc
- Assets
- $5.5m
- Revenue
- $1.3m
- Investments
- $0.0
- Employees
- 7
- Location
- Larchmont, NY
- Founding
- 01/2001
- Data as of
- 12/2023
- EIN
- 22-3755704
Organization Overview
Barth Syndrome Foundation Inc is located in Larchmont, NY. The organization was established in 2001. According to its NTEE Classification (T30) the organization is classified as: Public Foundations, under the broad grouping of Philanthropy, Voluntarism & Grantmaking Foundations and related organizations. As of 12/2023, Barth Syndrome Foundation Inc employed 7 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Barth Syndrome 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 12/2023, Barth Syndrome Foundation Inc generated $1.3m in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 2.7% each year. All expenses for the organization totaled $1.4m during the year ending 12/2023. While expenses have increased by 1.8% per year over the past 8 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 2016, Barth Syndrome Foundation Inc has awarded 34 individual grants totaling $1,758,748. 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
2023
Describe the Organization's Mission:
Part 3 - Line 1
1)TO PROMOTE AWARENESS OF BARTH SYNDROME; 2) TO EDUCATE AND SUPPORT PHYSICIANS, RESEARCH CENTERS, AND ORGANIZATIONS ADDRESSING THE CAUSES, DIAGNOSIS, TREATMENTS AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2023 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE.
REPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME. THESE PROGRAMS ARE COMPRISED OF SERVICES RELATED TO ADVOCACY AND AWARENESS, COMMUNICATION AND AWARENESS, AND FAMILY SERVICES.
THIS CONFERENCE WHICH IS HELD EVERY TWO YEARS, BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGEHTER IN ONE PLACE AT A TIME, SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY, CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. DUE TO COVID-19, REGIONAL MEETINGS WERE HELD IN 2023. THE CONFERENCE CONTINUES TO BE A KEY PILLAR OF THE ORGANIZATION.
THE THERAPY FUND FOR THE ADVANCEMENT OF THERAPIES FOR BARTH SYNDROME WILL BE USED EXCLUSIVELY FOR THE DEVELOPMENT OF THERAPIES DESIGNED TO PREVENT, ALLEVIATE, OR ELIMINATE THE SYMPTOMS OF BARTH SYNDROME.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Andrew Buddemeyer Board Member | Trustee | 2 | $0 |
Brandi Dague Board Member | Trustee | 2 | $0 |
Bruce Develle Board Member | Trustee | 2 | $0 |
Florence Mannes Board Member | Trustee | 2 | $0 |
Jonathan Stokes Board Member | Trustee | 2 | $0 |
Megan Branagh Board Member | Trustee | 2 | $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 | $1,228,396 |
| Noncash contributions included in lines 1a–1f | $22,052 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,228,396 |
| Total Program Service Revenue | $0 |
| Investment income | $131,351 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$24,941 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,334,806 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $128,032 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $155,006 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $229,984 |
| Compensation of current officers, directors, key employees. | $34,498 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $410,056 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $36,775 |
| Payroll taxes | $49,862 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $7,965 |
| Fees for services: Accounting | $58,148 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $161,140 |
| Advertising and promotion | $0 |
| Office expenses | $90,802 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $44,325 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $4,979 |
| All other expenses | $920 |
| Total functional expenses | $1,421,717 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $460,296 |
| 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 | $48,135 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $4,957,899 |
| Investments—other securities | $0 |
| Investments—program-related | $25,000 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $5,491,330 |
| Accounts payable and accrued expenses | $94,143 |
| Grants payable | $84,650 |
| Deferred revenue | $27,183 |
| 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 | $205,976 |
| Net assets without donor restrictions | $1,322,181 |
| Net assets with donor restrictions | $3,963,173 |
| 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 | $5,491,330 |
Grants Awarded
Over the last fiscal year, Barth Syndrome Foundation Inc has awarded $128,032 in support to 3 organizations.
| Grant Recipient | Amount |
|---|---|
NYU REGISTRY ARRHYTHMIA STUDY PURPOSE: ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION | $42,455 |
AMERICAN HEART ASSOCIATION PURPOSE: HEART DISEASE, STROKE, AND CARDIOVASCULAR HEALTH | $16,277 |
BOSTON CHILDREN'S HOSPITAL PURPOSE: OPTIMIZATION OF BARTH SYNDROME GENE THERAPY | $69,300 |