Haystack Project Inc
- Assets
- $287.3k
- Revenue
- $482.7k
- Investments
- $0.0
- Employees
- 0
- Location
- Washington, DC
- Founding
- 03/2019
- Data as of
- 12/2021
- EIN
- 83-3367375
Organization Overview
Haystack Project Inc is located in Washington, DC. The organization was established in 2019. According to its NTEE Classification (G01) the organization is classified as: Alliances & Advocacy, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Haystack Project 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 12/2021, Haystack Project Inc generated $482.7k in total revenue. This organization has experienced exceptional growth, as over the past 3 years, it has increased revenue by an average of 72.1% each year . All expenses for the organization totaled $364.1k during the year ending 12/2021. While expenses have increased by 59.0% per year over the past 3 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.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
HAYSTACK PROJECT BRINGS TOGETHER THE STAKEHOLDERS CONNECTED TO RARE AND ULTRA RARE CONDITIONS TO EDUCATE THEM AND ASSIST WITH THEIR SELF-ADVOCACY EFFORTS
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE ORGANIZATION HIRED CONSULTANTS TO DRAFT A SERIES OF REPORTS ON VALUE WHICH GIVES PROVIDERS DEEPER INSIGHTS INTO THE PATIENTS' PERSPECTIVES AND PERCEPTION OF VALUE. THIS PROVIDES PATIENTS WITH A WAY TO COME TOGETHER AND MAGNIFY THEIR VOICES SO THEY ARE BETTER HEARD BY GROUPS AND AUTHORITIES THAT MAKE COVERAGE DECISIONS AND FORMULARY DESIGNATIONS. THE ORGANIZATION MAINTAINS A LIBRARY OF THESE REPORTS SO THAT MEMBER ORGANIZATIONS CAN LEARN FROM THEM, CONDUCT THEIR OWN AND USE THEM TO MAGNIFY THEIR VOICES.
ENGAGE CONSULTANTS TO DRAFT COMMENT LETTERS IN RESPONSE TO FEDERAL AGENCY PROPOSALS WHICH IMPACT RESEARCH, DEVELOPMENT AND PATIENT ACCESS TO TREATMENTS CRITICAL TO RARE AND ULTRA RARE CONDITIONS.
ENGAGE THIRD PARTY CONSULTANTS TO PROVIDE MONTHLY AND AD HOC CALLS WITH PATIENTS GROUPS. CALLS WERE FOCUSED ON IDENTIFYING ISSUES RELATED TO SYSTEMIC BARRIERS TO ACCESS TO CARE AND TREATMENTS. CONSULTANTS PROVIDED GROUPS WITH GUIDANCE ON THE RULES, REGULATIONS, AND LAWS THAT IMPACT PATIENT CARE INCLUDING PROPOSALS CURRENTLY PENDING WITH POLICY MAKERS. CONSULTANTS HELPED COLLECT, COLLATE AND COMPARTMENTALIZE WHICH PATIENT EXPERIENCES RELATED BACK TO WHICH CURRENT AND PENDING LAW, REGULATIONS AND PROPOSALS. PATIENT GROUPS WERE PROVIDED A FORUM FROM WHICH THEY CAN LEARN FROM EACH OTHER. AS PART OF THIS EFFORT, THE ORGANIZATION HAS CREATED THE ADVOCACY EMPOWERMENT INSTITUTE (AEI). THE END GOAL OF AEI IS TO BETTER ARM PATIENTS FOR THE IMPORTANT ROLE OF SELF-ADVOCACY. THE ORGANIZATION HAS ALSO CREATED SPECIAL MEMBER FOCUSED PROGRAMS SPECIFICALLY TAILORED TO ADDRESS THE NEEDS AND CONCERNS OF PAYORS, MINORITIES, AND RARE CANCER PATIENTS. CONSULTANTS ALSO RESEARCH, MODERATE, AND SUMMARIZE A MONTHLY SPEAKER SERIES.
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PDF Copies of 990 Filings
Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Deanna Darlington CEO | Officer | 5 | $3,000 |
Joseph Chirico Treasurer | Officer | 0.5 | $0 |
Bela Sastry Secretary | Officer | 0.5 | $0 |
James Caro Board Member | Trustee | 0.5 | $0 |
Susan Thornton Board Member | Trustee | 0.5 | $0 |
Marc Yale Board Member | Trustee | 0.5 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $4,127 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $478,580 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $482,707 |
| 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 | $482,707 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $250 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $3,000 |
| Compensation of current officers, directors, key employees. | $3,000 |
| 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 | $110,745 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $300 |
| Fees for services: Lobbying | $20,000 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $0 |
| Advertising and promotion | $1,663 |
| Office expenses | $0 |
| Information technology | $2,859 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $0 |
| 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 | $1,600 |
| All other expenses | $0 |
| Total functional expenses | $364,053 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $287,269 |
| 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 | $287,269 |
| 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 | $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 |
| Retained earnings, endowment, accumulated income, or other funds | $287,269 |
| Total liabilities and net assets/fund balances | $287,269 |
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