Nonprofit · EIN 13-3292137
INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA
Tax-exempt · AKRON, OH 44311
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| September 30, 2025 | 990 | $399,060 | $447,540 | -$48,480 | $108,396 | $38,444 | $69,952 |
| September 30, 2024 | 990 | $486,964 | $633,847 | -$146,883 | $165,553 | $47,121 | $118,432 |
| September 30, 2023 | 990 | $647,913 | $648,895 | -$982 | $315,917 | $50,940 | $264,977 |
Financial details: 990 for the year ended September 30, 2025
Revenue
- Contributions, gifts and grants
- $315,265
- Program service revenue
- $83,569
- Investment income
- $226
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $0
- Compensation of officers, directors and key employees
- $131,250
- Other salaries and wages
- $92,626
- Salaries, compensation and benefits (total)
- $246,236
- Professional fundraising fees
- $0
- Legal fees
- $9,984
- Accounting fees
- $15,020
- Travel
- $7,464
- Program services (functional)
- $325,615
- Management and general (functional)
- $67,296
- Fundraising (functional)
- $54,629
Balance sheet and other
- Total assets, start of year
- $165,553
- Total assets, end of year
- $108,396
- Total liabilities, end of year
- $38,444
- Net assets, end of year
- $69,952
- Net assets without donor restrictions
- $69,952
- Gross receipts
- $399,060
- Employees
- 2
- Volunteers
- 9
- Year formed
- 1984
- State of legal domicile
- NY
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended September 30, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| CLAUDIA KING | CEO Officer | 40 | $25,000 |
| LAURA SANTURRI | EXECUTIVE DI Officer | 40 | $0 |
| AMBER CARTER FRAUENHOFER | CHAIR Trustee or director, Officer | 3 | $0 |
| CALLIE KRAJCIR | VICE CHAIR Trustee or director, Officer | 3 | $0 |
| ILKA ROSS | TREASURER Trustee or director, Officer | 3 | $0 |
| SHELLEY KARDON | SECRETARY Trustee or director, Officer | 3 | $0 |
| CHRISTOPHER MEENAN | DIRECTOR Trustee or director | 1.5 | $0 |
| ERIC ZARNIKOW | DIRECTOR Trustee or director | 1.5 | $0 |
| JANELLE FABA | DIRECTOR Trustee or director | 1.5 | $0 |
| NATASHA BOSWELL | DIRECTOR Trustee or director | 1.5 | $0 |
| LEE KING | DIRECTOR Trustee or director | 1.5 | $0 |
| JESSE FRAUENHOFER | DIRECTOR Trustee or director | 1.5 | $0 |
| SARAH COJOCARU | DIRECTOR Trustee or director | 1.5 | $0 |
| THEDA KHRESTIN | DIRECTOR Trustee or director | 1.5 | $0 |
| DAVID KLUMPP | DIRECTOR Trustee or director | 1.5 | $0 |
4 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| HOLLY GOODWIN | DIRECTOR Trustee or director | 1.5 | $0 |
| AVERY SINGER | DIRECTOR Trustee or director | 1.5 | $0 |
| LAURA SANTURRI | CHAIR Trustee or director, Officer | 3 | $0 |
| CLAUDIA KING | VICE CHAIR Trustee or director, Officer | 3 | $0 |
990 for the year ended September 30, 2024: 16 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Laura Santurri | Chair Trustee or director, Officer | 3 | $0 |
| Claudia King | Vice Chair Trustee or director, Officer | 3 | $0 |
| Michael Greenwell | Immediat Past Chair Trustee or director, Officer | 1 | $0 |
| Amber Carter | Director Trustee or director | 1.5 | $0 |
| Theda Khrestin | Director Trustee or director | 1.5 | $0 |
| Shelley Kardon | Director Trustee or director | 1.5 | $0 |
| Sarah Cojocaru | Director Trustee or director | 1.5 | $0 |
| Ilka Ross | Director Trustee or director | 1.5 | $0 |
| David Klumpp | Director Trustee or director | 1.5 | $0 |
| Chris Meenan | Director Trustee or director | 1.5 | $0 |
| Eric Zarnikow | Director Trustee or director | 1.5 | $0 |
| Natasha Boswell | Director Trustee or director | 1.5 | $0 |
| Tacha Kasper | Director Trustee or director | 1.5 | $0 |
| Rick Lufkin | Director Trustee or director | 1.5 | $0 |
| Janelle Faba | Director Trustee or director | 1.5 | $0 |
| Lee Lowery | Executive Director Officer | 10 | $0 |
990 for the year ended September 30, 2023: 16 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Laura Santurri | Chair Trustee or director, Officer | 2.5 | $0 |
| Claudia King | Vice Chair Trustee or director, Officer | 2.5 | $0 |
| Richard Lufkin | Treasurer Trustee or director, Officer | 1.5 | $0 |
| Michael Greenwell | Immediat Past Chair Trustee or director, Officer | 1 | $0 |
| Natasha Boswell | Director Trustee or director | 1 | $0 |
| Amber Carter | Director Trustee or director | 1 | $0 |
| Nicole Cozean | Director Trustee or director | 1 | $0 |
| Tacha Kasper | Director Trustee or director | 1 | $0 |
| Theda Khrestin | Director Trustee or director | 1 | $0 |
| Dan Vickery | Director Trustee or director | 1 | $0 |
| Eric Zarnikow | Director Trustee or director | 1 | $0 |
| David Klumpp | Director Trustee or director | 1 | $0 |
| Shelley Kardon | Director Trustee or director | 1 | $0 |
| Sarah Cojocaru | Director Trustee or director | 1 | $0 |
| Janelle Faba | Director Trustee or director | 1 | $0 |
| Lee Lowery | Executive Director Officer | 10 | $0 |
Address and contacts
- Address (IRS master file)
- 388 S MAIN ST STE 440 PMB 157, AKRON, OH 44311-4407
- Principal officer (990 for 2024)
- LAURA SANTURRI, 388 S MAIN ST SUITE 440-157, AKRON, OH 44311
- Signed the 990
- LAURA SANTURRI, EXECUTIVE DIRECTOR
- Phone
- (720) 515-1411
- Website
- ICHELP.ORG
- Return prepared by
- TAYLOR ROTH AND COMPANY
Mission
TO ADVOCATE FOR RESEARCH DEDICATED TO DISCOVERY OF A CURE AND BETTER TREATMENTS, RAISE AWARENESS, AND SERVE AS A CENTRAL HUB FOR HEATHCARE PROVIDERS, RESEARCHERS AND MILLIONS OF PATIENTS WITH INTERSTITIAL CYSTITIS.
Program accomplishments
- EDUCATION: THE ICA DELIVERS CRITICAL HEALTH INFORMATION TO PATIENTS, CAREGIVERS, HEALTHCARE PROVIDERS, RESEARCHERS, AND THE PUBLIC. PROGRAMS INCLUDE MONTHLY WEBINARS ABOUT IC/BPS FOR PATIENTS, FAMILY MEMBERS, HEALTHCARE PROVIDERS, AND THE PUBLIC; EDUCATIONAL RESOURCES SUCH AS THE ICA UPDATE MAGAZINE AND MONTHLY ICA ENEWS AND RESEARCH DIGEST; DIRECT PATIENT PROGRAMMING THAT PROVIDES EDUCATION AND SUPPORT, AND A COMPREHENSIVE WEBSITE.Expenses $162,275 · revenue $83,569
- ADVOCACY: THE DISABLING PAIN, URGENCY, AND FREQUENCY OF IC/BPS 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/BPS PATIENTS.Expenses $82,918
- GENERAL PROGRAMS: IN ADDITION TO THE ICA'S EDUCATIONAL AND ADVOCACY INITIATIVES, THE ICA PROVIDES A COMMUNITY OF SUPPORT FOR PEOPLE LIVING WITH IC/BPS AND THOSE WHO CARE FOR THEM. THESE INITIATIVES INCLUDE ONLINE SUPPORT COMMUNITIES; THE ICA AMBASSADOR PROGRAM, PROVIDING GUIDANCE (BUT NOT MEDICAL ADVICE) IN RESPONSE TO DIRECT COMMUNITY INQUIRIES; AND OUR PODCAST THAT PROVIDES AN OUTLET FOR SHARING STORIES AND HELPING PATIENTS FEEL LESS ALONE.Expenses $80,422
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in September, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | September 30, 2026 | February 16, 2027 | Not due yet |
| 2024 | September 30, 2025 | February 17, 2026 | 990 on file |
| 2023 | September 30, 2024 | February 18, 2025 | 990 on file |
IRS record
- EIN
- 13-3292137
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1985
- Accounting year ends
- September
- Files
- Form 990 or 990-EZ
- Assets (IRS master file)
- $108,396
- Income (IRS master file)
- $399,060
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | September 2025 | $399,060 | $447,540 | $108,396 | XML |
| 990 | September 2024 | $486,964 | $633,847 | $165,553 | XML |
| 990 | September 2023 | $647,913 | $648,895 | $315,917 | XML |
| 990 | September 2022 | $604,676 | $629,962 | $304,762 | IRS |
| 990 | September 2021 | – | – | – | IRS |
| 990 | September 2020 | – | – | – | IRS |
| 990 | September 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 13-3292137).
Questions about INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA
- What is the EIN of INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA?
- The employer identification number (EIN) of INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA is 13-3292137.
- Is INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1985.
- Are donations to INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA due?
- The return for tax year 2025 (the year ending September 30, 2026) is due February 16, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended September 2025.
- Who is the principal officer of INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA?
- The 990 for the year ended September 30, 2025 names LAURA SANTURRI.
- Who are the officers and directors of INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA?
- The 990 for the year ended September 30, 2025 lists 19 people; 1 received compensation from the organization, the highest $25,000 (CLAUDIA KING, CEO).
- How much revenue does INTERSTITIAL CYSTITIS ASSOCIATION OF AMERICA have?
- On its 990 for the year ended September 30, 2025 it reported revenue of $399,060, expenses of $447,540 and total assets of $108,396 at year end.
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