Rare Trait Hope Fund
- Assets
- $174.2k
- Revenue
- $260.6k
- Investments
- $0.0
- Employees
- 0
- Location
- Belle Chasse, LA
- Founding
- 08/2013
- Data as of
- 12/2022
- EIN
- 46-2762646
Organization Overview
Rare Trait Hope Fund is located in Belle Chasse, LA. The organization was established in 2013. 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. Rare Trait Hope Fund 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 12/2022, Rare Trait Hope Fund generated $260.6k in total revenue. This organization has experienced exceptional growth, as over the past 4 years, it has increased revenue by an average of 68.5% each year . All expenses for the organization totaled $627.1k during the year ending 12/2022. 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
2022
Describe the Organization's Mission:
Part 3 - Line 1
THE MISSION AND PRIMARY EXEPMT PURPOSE IS TO FACILITATE RESEARCH, RAISE FUNDS AND SUPPORT DEVELOPMENT OF TREATMENTS FOR ASPARTYLGLUCOSAMINURIA (AGU); TO BE THE RESOURCE FOR DOCTORS, SCIENTISTS AND FAMILIES WORLD-WIDE; TO INCREASE AWARENESS OF RARE DISEASES IN GENERAL AND ASPARTYLGLUCOSAMINURIA IN PARTICULAR.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PER FDA FEEDBACK FROM PRE-IND MEETING IN 2018, WE CONTINUE PRODUCTION OF THE GENE THERAPY PRODUCT THAT WILL BE USED IN A CLINICAL TRIAL FOR AGU TREATMENT. LARGEST EXPENSE FOR 2022 IS THE PAYMENT FOR AGA PLASMID PRODUCTION AND VECTOR PRODUCTION.
SETTING UP PATIENT REGISTRY
AGA DRUG PRODUCT VECTOR PRODUCTION FEASIBILITY STUDY PER PROPOSAL FROM AUGUST 11, 2021
AGA PLASMID/AAV SEQUENCING AND OTHER TESTING SERVICES
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Julia Taravella President, Executive Director | Trustee | 50 | $0 |
Guzel Bilyalova Secretary, Treasure | Trustee | 2 | $0 |
Jody Taravella Director | Trustee | 2 | $0 |
Emily Moran Director | Trustee | 1 | $0 |
Erik Heywood Director | Trustee | 10 | $0 |
Alla Comardelle Director | Trustee | 5 | $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 | $260,648 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $260,648 |
| Total Program Service Revenue | $0 |
| Investment income | $0 |
| 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 | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $260,648 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| 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. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $0 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $41 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $0 |
| Advertising and promotion | $127 |
| Office expenses | $166 |
| Information technology | $875 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $10,632 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $430 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $0 |
| All other expenses | $0 |
| Total functional expenses | $627,071 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $174,245 |
| 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 | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $174,245 |
| Accounts payable and accrued expenses | $0 |
| 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 | $0 |
| Net assets without donor restrictions | $174,245 |
| 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 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $174,245 |