2025-04-10T12:00:17-05:00 2024-09-30 582676261 Rogers & Company PLLC 8300 Boone Boulevard Suite 600 Vienna VA 22182 990 2023-10-01 133292137 Interstitial Cystitis Association of America Inc INTE 7034422070 1660 International Drive 600 McLean VA 221024877 Claudia King CEO 7034422070 2025-04-10 1 0 Jie Chen CPA P01049760 7038930300 2023 2025-03-06 01:10:19Z Interstitial Cystitis Association Claudia King 1660 International Drive 600 McLean VA 221024877 487196 0 X www.ichelp.org X 1984 NY 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. 15 15 0 20 0 0 542416 390726 102258 92884 23 891 3216 2463 647913 486964 0 0 0 0 0 0 0 0 90473 648895 633847 648895 633847 -982 -146883 315917 165553 50940 47121 264977 118432 X 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. 0 1 297885 92884 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. 162917 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. 47169 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. 507971 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 2 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 X 15 15 0 1 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 0 0 0 AL AK AZ CA CT FL GA IL KS ME MD MA MI MN MS NH NJ NY OH OK RI SC TN UT VA WA WV WI X X Lee K Lowery 7034422070 1660 International Drive Suite 600 McLean VA 221024877 X Laura Santurri Chair 3.00 X X 0 0 0 Claudia King Vice Chair 3.00 X X 0 0 0 Michael Greenwell Immediat Past Chair 1.00 X X 0 0 0 Amber Carter Director 1.50 X 0 0 0 Theda Khrestin Director 1.50 X 0 0 0 Shelley Kardon Director 1.50 X 0 0 0 Sarah Cojocaru Director 1.50 X 0 0 0 Ilka Ross Director 1.50 X 0 0 0 David Klumpp Director 1.50 X 0 0 0 Chris Meenan Director 1.50 X 0 0 0 Eric Zarnikow Director 1.50 X 0 0 0 Natasha Boswell Director 1.50 X 0 0 0 Tacha Kasper Director 1.50 X 0 0 0 Rick Lufkin Director 1.50 X 0 0 0 Janelle Faba Director 1.50 X 0 0 0 Lee Lowery Executive Director 10.00 X 0 0 0 0 0 0 0 0 0 0 MCI USA 1660 International Dr Suite 600 McLean VA 22102 Management services 433968 1 817 80000 309909 390726 Industry publications 900099 64584 64584 Media campaign 900099 28300 28300 92884 891 891 2695 232 2463 2463 486964 95347 0 891 433968 381892 8679 43397 13873 13873 54061 54061 40079 40079 5550 5550 22484 1489 7143 13852 1726 364 1362 2617 2617 Internet outreach 30575 16041 447 14087 Printing and reproducti 16789 8495 1 8293 Registration fees/taxes 10844 10844 Miscellaneous 1281 1281 633847 507971 35403 90473 130025 68894 33895 36281 137860 26500 11762 1362 354 1013 33524 315917 165553 25107 21288 25833 25833 50940 47121 X 264977 118432 264977 118432 315917 165553 -146883 338 0 X X 0 1 X 1 0 X 740034 718809 558771 542416 390726 2950756 740034 718809 558771 542416 390726 2950756 503366 2447390 74 3 14 23 891 1005 2629 2629 2954390 313193 0.82840 0.88380 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 54083 0 0 54083 0 Part II-B, Line 1: The ICA works with congressmen and women educating them about interstitial cystitis, advocating for federal research funding for IC, and promoting legislative policies important to the concerns of interstitial cystitis patients, healthcare providers, and researchers. 0 X 487534 338 232 570 486964 0 486964 634079 232 232 633847 0 633847 Part X, Line 2: Management has evaluated the ICA's tax positions and has concluded that the ICA has taken no uncertain tax positions that qualify for either recognition or disclosure in the accompanying financial statements. Part XI, Line 2d - Other Adjustments: Cost of goods sold 232. Part XII, Line 2d - Other Adjustments: Cost of goods sold 232. Form 990, Part III, line 3 The Organization discontinued the Research program in FY24. Form 990, Part VI, Section A, line 3 The Association has an agreement with MCI USA, under which MCI USA provides management services and headquarters space to the Association. Management fees totaled $421,331 for the year ended September 30, 2023. The Association's Executive Director is an employee of and was compensated by MCI USA. Form 990, Part VI, Section B, line 11b The Executive Director reviews the Form 990 and presents it to the Treasurer and the entire Board for review before it is signed and filed. Form 990, Part VI, Section B, line 12c Each December the ICA sends reminders to members of the Board (in writing) about the conflict of interest policy. The reminder is sent along with a standard disclosure form. Board members are asked to list conflicts of interest, date and sign the form and return it to the ICA office for filing. Form 990, Part VI, Section C, line 19 The ICA makes financial statements available to the public on the ICA website (www.ICHELP.org) as a downloadable PDF. A limited number of copies are also available in printed format. The ICA makes the conflict of interest policy and financial statements available to standard of excellence organizations and funders, as required. Requests by others are determined on an individual basis by the executive director who consults with the board of directors, as needed, on such decisions. Form 990, Part XII, line 2c: No change from prior year.