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McLean VA | IRS ruling year: 1985 | EIN: 13-3292137
Organization Mission
The Interstitial Cystitis Association (ICA) advocates for research dedicated to discovery of a cure and better treatments, raises awareness, and serves as a central ... (More)
The Interstitial Cystitis Association (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.
The mission of the ICA is to ensure efficient diagnosis and optimal care for people affected by IC/BPS through advocacy, education, and community. (Less)
Great
This charity's score is 100%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores, weighted as follows: 90% Accountability & Finance, 10% Leadership & Adaptability. Learn more about our criteria and methodology.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Results. The historic rating mainly reflects a version of today’s Accountability and Finance score. More information on our previous rating methodologies can be found on our rating methodology page.
| Date Published | Overall Rating | ||
| 5/1/2021 |  | ||
| 12/1/2019 | | ||
| 12/21/2018 | | ||
| 3/1/2018 |  | ||
| 11/1/2016 | | ||
| 6/1/2016 | | ||
| 11/1/2015 | | ||
This organization received multiple star ratings within this fiscal year, due to an update to its Accountability and Transparency data and/or the receipt of an amended Form 990. | |||
| 12/22/2014 | | ||
| 10/1/2013 | | ||
| 9/1/2013 | | ||
| 7/1/2012 | | ||
| 10/1/2011 | | ||
| 9/20/2011 | | ||
| 8/1/2010 | | ||
| 10/1/2009 | | ||
| 7/1/2008 | | ||
| 7/1/2007 | | ||
| 2/1/2007 | | ||
Score
Most Recent Fiscal Year:
FY 2022
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
Learn more
Full Credit
Partial Credit
No CreditMajority Independent Board Members - 100% independent members8 out of 8 points Majority Independent Board Members - 100% independent members8 out of 8 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. We check to see that a majority of board members are identified as independent on their tax form.
Source: IRS Form 990
Independent Board Size - 11 independent members7 out of 7 points Independent Board Size - 11 independent members7 out of 7 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three independent board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members
Source: IRS Form 990
Financial Statements - Audit and Oversight Committee15 out of 15 points Financial Statements - Audit and Oversight Committee15 out of 15 points
An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:
| Total Revenue Amount | Expectation to Receive Credit |
| $2 million or higher and 40% or higher donor support | Expected to complete an audit and have an audit oversight committee |
| $1 million or higher | Expected to complete an audit |
| $500,000 - $1 million | Expected to complete an audit, review, or compilation |
| Less than $500,000 | No expectation (removed from scoring methodology) |
Source: IRS Form 990
Material Diversion of Assets - None10 out of 10 points Material Diversion of Assets - None10 out of 10 points
A diversion of assets — any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.
Source: IRS Form 990
Full CreditPartial CreditNo CreditWebsite Listed on Tax Form - Listed2 out of 2 points Website Listed on Tax Form - Listed2 out of 2 points
Charity Navigator looks for a website on the IRS Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
Conflict of Interest Policy - Listed4 out of 4 points Conflict of Interest Policy - Listed4 out of 4 points
Charity Navigator looks for the existence of a conflict of interest policy on the IRS Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Whistleblower Policy - Listed4 out of 4 points Whistleblower Policy - Listed4 out of 4 points
Charity Navigator looks for the existence of a whistleblower policy per the IRS Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Document Retention and Destruction - Listed4 out of 4 points Document Retention and Destruction - Listed4 out of 4 points
Charity Navigator looks for the existence of a document retention and destruction policy per the IRS Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Documents Board Meeting Minutes - Yes2 out of 2 points Documents Board Meeting Minutes - Yes2 out of 2 points
Charity Navigator looks to confirm on the IRS Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Full CreditPartial CreditNo CreditTax Form Posted on Nonprofit's Website - Listed4 out of 4 points Tax Form Posted on Nonprofit's Website - Listed4 out of 4 points
For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.
Source: IRS Form 990
Full CreditPartial CreditNo CreditLiabilities to Assets: Ratio - 10.94%15 out of 15 points Liabilities to Assets: Ratio - 10.94%15 out of 15 points
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.
Source: IRS Form 990
Program Expense: Ratio - 79.47%25 out of 25 points Program Expense: Ratio - 79.47%25 out of 25 points
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
Source: IRS Form 990
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Michael Greenwell, Chair
Compensation not entered
Laura Santurri, Vice Chair
Compensation not entered
Richard Lufkin, Treasurer
Compensation not entered
Natasha Boswell, Director
Compensation not entered
Amber Carter, Director
Compensation not entered
Source: IRS Form 990 (page 7), filing year 2022
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Affiliation:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Interstitial Cystitis Association) or EIN (133292137) in the 'Search Term' field.
Not Currently Scored
Interstitial Cystitis Association cannot currently be evaluated by our Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Not Currently Scored
Interstitial Cystitis Association cannot currently be evaluated by our Culture & Community methodology because we have not received data from the charity regarding its Constituent Feedback or Equity Practices strategies.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Score
This beacon provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Learn more
Full CreditPartial CreditNo CreditMission 10/10 points Mission 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
The Interstitial Cystitis Association (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. The mission of the ICA is to ensure efficient diagnosis and optimal care for people affected by IC/BPS through advocacy, education, and community.
Vision 10/10 points Vision 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Conquering IC/BPS. Changing lives. The ICA was established in 1984 to put a face on all those affected by IC/BPS and remains today the only non-profit health association solely dedicated to improving the quality of healthcare and the lives of people affected by IC/BPS. As an organization, we value: Evidence-Based Information—We role model best practices and connect our community with science-driven education. Hope—We support our community with grace, care, and compassion and with the purpose of improving lives. Diversity—We value the broad range of perspectives offered by our community. We believe the unique backgrounds and experiences that inform their contributions to our community add depth and richness to the work that we do. Leadership—We strive to be the premier organization serving the IC/BPS community in the United States.
Source: Nonprofit submitted responses
Goals 20/20 points Goals 20/20 points
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Advocacy: By rallying a grassroots network, ICA advocacy efforts empower people affected by IC/BPS around the country and the world, teaching them to become self-advocates for their healthcare needs.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Two: Education: ICA’s educational programs raise awareness of & empower those affected to change lives. The ICA serves as curator & translator of the most current science-based information on IC/BPA.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Three: Community: ICA provides support for those with IC/BPS. Fostering connection, shared experiences, & collective growth/learning. Powerful connector between healthcare providers, researchers, & patients.
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Leadership Development 15/15 points Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
The ICA is accepting applications from leaders in IC/BPS health care & research to advise & support the activities of the ICA by serving on its Medical Advisory Council (MAC) for a 3-year term. The ICA’s MAC plays a leadership role by providing medical & scientific expertise to advance the ICA mission. Specifically, MAC members will be asked to contribute advice & expertise to the current & future work of ICA, meet once per year to discuss matters relevant to the ICA’s mission & work, attend ICA events & fundraisers, where feasible, provide one piece of educational content (e.g., webinar, social media post, article, etc.) annually on a subject with which they have subject matter expertise. All educational content will be approved by the ICA Board (or appropriate committee) & may be used in webinars, social media posts, & articles, & asked to contribute financially to the ICA at the level with which they feel comfortable.
Mobilizing for Mission 15/15 points Mobilizing for Mission 15/15 points
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
Strategic Partnerships
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
What are this organization’s external mobilizaton efforts?
Corporate Partners: ICA builds strategic relationships with companies committed to our shared goal to improve the lives of those in the IC/BPS community by providing funding, services, & programs. The ICA participated in the recent International Society for the Study of Interstitial Cystitis/Bladder Pain Syndrome (ESSIC) meeting in NYC. The IC/BPS Symposium & ICA Awareness Walk in Clearwater, FL: Renowned physicians & researchers in the field of IC/BPS shared their knowledge & expertise with the attendees (in-person & virtual.) The speakers provided invaluable insights to the attendees, & everyone left with an understanding of IC/BPS. An Awareness Walk followed, where participants walked a mile to raise awareness for IC/BPS. ICA Advocacy Day took place on April 17, 2023. Attendees included ICA Board Members, staff, & passionate advocates who met with Congressional offices from 16 different states. Focus: to advocate for vital research funding & education in the IC/BPS community.
Adaptability Story 30/30 points Adaptability Story 30/30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
The ICA is empowered to create a lasting impact by ensuring efficient diagnosis and optimal care for people affected by IC/BPS through advocacy, education, and community through: Evidence-Based Information—We role model best practices and connect our community with science-driven education. Hope—We support our community with grace, care, and compassion and with the purpose of improving lives. Diversity—We value the broad range of perspectives offered by our community. We believe the unique backgrounds and experiences that inform their contributions to our community add depth and richness to the work that we do. Leadership—We strive to be the premier organization serving the IC/BPS community in the United States. We believe that together, we can achieve far more than what is individually possible.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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