Interstitial Cystitis Association Of America
- Assets
- $315.9k
- Revenue
- $647.9k
- Investments
- $0.0
- Employees
- 0
- Location
- McLean, VA
- Founding
- 11/1985
- Data as of
- 09/2023
- EIN
- 13-3292137
Organization Overview
Interstitial Cystitis Association Of America, operating under the name Interstitial Cystitis Association, is located in McLean, VA. The organization was established in 1985. According to its NTEE Classification (H99) the organization is classified as: Medical Research N.E.C., 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. Interstitial Cystitis Association 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 09/2023, Interstitial Cystitis Association generated $647.9k in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 3.8% each year. All expenses for the organization totaled $648.9k during the year ending 09/2023. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Interstitial Cystitis Association has awarded 12 individual grants totaling $296,507. 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
THE ICA ADVOCATES FOR RESEARCH DEDICATED TO DISCOVERY OF A CURE AND BETTER TREATMENTS, RAISES AWARENESS, AND SERVES AS A CENTRAL HUB FOR THE HEALTHCARE PROVIDERS, RESEARCHERS AND MILLIONS OF PATIENTS WHO SUFFER WITH CONSTANT URINARY URGENCY AND FREQUENCY AND EXTREME BLADDER PAIN CALLED IC/BPS, OR INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME.
Describe the Organization's Program Activity:
Part 3 - Line 4a
EDUCATION: THE ICA DELIVERS CRITICAL HEALTH INFORMATION AND SUPPORT TO PATIENTS, CAREGIVERS, HEALTHCARE PROVIDERS, RESEARCHERS AND THE PUBLIC. PROGRAMS INCLUDE MEDICAL EDUCATION PROGRAMS FOR HEALTHCARE PROVIDERS; SEMINARS ABOUT IC FOR PATIENTS, FAMILY MEMBERS AND THE PUBLIC; INTERACTIVE SERVICES THAT TEACH IC PATIENTS SELF-CARE STRATEGIES; EDUCATIONAL RESOURCES, E.G. THE ICA UPDATE MAGAZINE AND WEEKLY ICA ENEWS. THE ICA COLLABORATES WITH THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) ON IC AWARENESS PROGRAMS.
RESEARCH: EACH IC DIAGNOSIS MEANS A NEW FIGHT FOR SOMEONE'S SPOUSE, PARENT, CHILD OR FRIEND. THERE IS NO CURE FOR IC. OUR TEAM TRACKS IC RESEARCH AND DISSEMINATES FINDINGS ACROSS MEDIA PLATFORMS. ICA LEADERSHIP ALSO SERVE ON GOVERNMENT AND INDUSTRY RESEARCH ADVISORY COMMITTEES.
ADVOCACY: THE DISABLING PAIN, URGENCY AND FREQUENCY OF INTERSTITIAL CYSTITIS (IC) STAYS WITH PATIENTS FOR THEIR LIFETIME. THE ICA RAISES AWARENESS AMONG LEGISLATORS AND KEY DECISION MAKERS ABOUT THE NEED FOR EXPANDED RESEARCH FUNDING TO FIND A CURE AND HEALTHCARE OPTIONS TO ADDRESS THE SPECIAL NEEDS OF IC PATIENTS.
CDC/BOSTON CHILDREN'S HOSPITAL SUB-GRANT: AS PART OF THE CDC COOPERATIVE AGREEMENT, THE ICA'S TARGETED PUBLIC EDUCATION AND OUTREACH EFFORT FOCUSED ON TWO ELEMENTS: 1) SOCIAL MEDIA AND DIGITAL MEDIA OUTREACH STRATEGY; AND 2) MINORITY RECRUITMENT OUTREACH.CDC/INSPIRE SUBGRANT: ICA WAS RESPONSIBLE FOR RECRUITING PARTICIPANTS, PROVIDING TIMELY FEEDBACK TO THE INSPIRE AND BOSTON CHILDREN'S HOSPITAL (BCH) ON DRAFTS OF RESEARCH TOOLS (I.E. SURVEYS) AND DISSEMINATION MATERIALS INCLUDING REPORTS AND MANUSCRIPTS, AND ATTENDING MEETINGS TO FACILITATE STRONG COMMUNICATION AND UNDERSTANDING OF THE RESEARCH RESULTS AMONG GRANT PARTNERS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Laura Santurri Chair | OfficerTrustee | 2.5 | $0 |
Claudia King Vice Chair | OfficerTrustee | 2.5 | $0 |
Richard Lufkin Treasurer | OfficerTrustee | 1.5 | $0 |
Michael Greenwell Immediat Past Chair | OfficerTrustee | 1 | $0 |
Natasha Boswell Director | Trustee | 1 | $0 |
Amber Carter Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $973 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $175,000 |
| All other contributions, gifts, grants, and similar amounts not included above | $366,443 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $542,416 |
| Total Program Service Revenue | $102,258 |
| Investment income | $23 |
| 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 | $3,216 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $647,913 |
| 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 | $421,331 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $13,100 |
| Fees for services: Lobbying | $53,736 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $45,858 |
| Advertising and promotion | $6,445 |
| Office expenses | $27,252 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $46 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $6,569 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $2,576 |
| All other expenses | $0 |
| Total functional expenses | $648,895 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $130,025 |
| Savings and temporary cash investments | $33,895 |
| Pledges and grants receivable | $137,860 |
| Accounts receivable, net | $11,762 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $1,362 |
| Prepaid expenses and deferred charges | $1,013 |
| 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 | $315,917 |
| Accounts payable and accrued expenses | $25,107 |
| Grants payable | $0 |
| Deferred revenue | $25,833 |
| 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 | $50,940 |
| Net assets without donor restrictions | $264,977 |
| 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 | $315,917 |
Grants Awarded
Over the last fiscal year, Interstitial Cystitis Association Of America has awarded $60,603 in support to 3 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF PITTSBURGH PURPOSE: General support | $24,835 |
UNIVERSITY OF SOUTHERN CALIFORNIA PURPOSE: General support | $23,268 |
LOYOLA UNIVERSITY CHICAGO PURPOSE: General support | $12,500 |