2024-07-11T14:36:55-05:00 2023-09-30 582676261 Rogers & Company PLLC 8300 Boone Boulevard Suite 600 Vienna VA 22182 990 2022-10-01 133292137 Interstitial Cystitis Association of America Inc INTE 7034422070 1660 International Drive 600 McLean VA 221024877 Lee K Lowery Executive Director 7034422070 2024-07-11 1 Lee Lowery 999009999 1 Jie Chen CPA P01049760 7038930300 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z Interstitial Cystitis Association Lee K Lowery 1660 International Drive 600 McLean VA 221024877 648117 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 50 0 0 558771 542416 38500 102258 14 23 7391 3216 604676 647913 0 0 0 0 0 0 0 0 102570 629962 648895 629962 648895 -25286 -982 304762 315917 33361 50940 271401 264977 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 0 276622 102258 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. 146475 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. 68748 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. 21067 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. 21067 512912 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 1 1 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 2.50 X X 0 0 0 Claudia King Vice Chair 2.50 X X 0 0 0 Richard Lufkin Treasurer 1.50 X X 0 0 0 Michael Greenwell Immediat Past Chair 1.00 X X 0 0 0 Natasha Boswell Director 1.00 X 0 0 0 Amber Carter Director 1.00 X 0 0 0 Nicole Cozean Director 1.00 X 0 0 0 Tacha Kasper Director 1.00 X 0 0 0 Theda Khrestin Director 1.00 X 0 0 0 Dan Vickery Director 1.00 X 0 0 0 Eric Zarnikow Director 1.00 X 0 0 0 David Klumpp Director 1.00 X 0 0 0 Shelley Kardon Director 1.00 X 0 0 0 Sarah Cojocaru Director 1.00 X 0 0 0 Janelle Faba Director 1.00 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 421331 1 973 175000 366443 542416 Media campaign 900099 58925 58925 Industry publications 900099 43333 43333 102258 23 23 3420 204 3216 3216 647913 105474 0 23 421331 370771 8427 42133 13100 13100 53736 53736 45858 45858 6445 6445 27252 2644 7825 16783 46 46 6569 6569 2576 2576 Internet outreach 40119 20916 10 19193 Printing and reproducti 20381 12496 329 7556 Registration fees/taxes 10336 10336 Miscellaneous 1146 1146 648895 512912 33413 102570 265520 130025 33872 33895 137860 2500 11762 1860 1362 1010 1013 304762 315917 33361 25107 25833 33361 50940 X 271401 264977 271401 264977 304762 315917 -982 -5442 0 X X 0 1 X 1 0 X 605556 740034 718809 558771 542416 3165586 605556 740034 718809 558771 542416 3165586 365295 2800291 18 74 3 14 23 132 2629 2629 3168347 253166 0.88380 0.89640 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 53736 0 0 53736 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 648117 204 204 647913 0 647913 649099 204 204 648895 0 648895 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 204. Part XII, Line 2d - Other Adjustments: Cost of goods sold 204. 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.