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Palo Alto CA | IRS ruling year: 1975 | EIN: 51-0169988
Cystic Fibrosis Research Institute works to fund research, provide educational and personal support, and spread awareness of cystic fibrosis (CF), a life-threatening ... (More)
Cystic Fibrosis Research Institute works to fund research, provide educational and personal support, and spread awareness of cystic fibrosis (CF), a life-threatening genetic disease. Cystic fibrosis (CF) is an inherited chronic disease that affects the respiratory, digestive and reproductive systems. As we work to find a cure for cystic fibrosis, CFRI envisions informing, engaging, and empowering the CF community to help all who have this challenging disease attain the highest possible quality of life. Our committees include: the Research Advisory Committee, which administers, reviews and offers guidance on what cystic fibrosis research to fund; the Events Committees, which organize and coordinate many popular events throughout the year; and the Newsletter Committee, which produces our award-winning monthly newsletter, with over 15,000 subscribers. (Less)
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This charity's score is 94%, 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: 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.
| Date Published | Form 990 FYE | Overall Score | Overall Rating |
| Rating Version: 2.1 | |||
| 7/1/2021 | 2019 | 93.24 | |
| 7/1/2020 | 2018 | 96.58 | |
| 10/1/2019 | 2017 | 97.17 | |
| 7/1/2018 | 2016 | 100.00 | |
| 6/1/2018 | 2016 | 97.17 | |
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. | |||
| 5/1/2018 | 2016 | 94.34 | |
| 4/1/2017 | 2015 | 94.05 | |
| 6/1/2016 | 2014 | 93.84 | |
| Rating Version: 2.0 | |||
| 11/1/2015 | 2014 | 94.71 | |
| 12/1/2014 | 2013 | 86.76 |  |
| 10/1/2013 | 2012 | 89.61 | |
| 9/1/2012 | 2011 | 89.03 | |
| 12/23/2011 | 2010 | 91.98 | |
| 12/1/2011 | 2010 | 88.82 | |
| 9/20/2011 | 2009 | 93.60 | |
| Rating Version: 1.0 | |||
| 2/1/2011 | 2009 | 90.95 | |
| 11/1/2009 | 2008 | 86.22 | |
| 11/1/2008 | 2007 | 93.73 | |
| 11/1/2007 | 2006 | 91.05 | |
| 2/1/2007 | 2005 | 88.04 | |
The IRS is significantly delayed in processing nonprofits' annual tax filings (Forms 990). As a result, the Accountability & Finance score for Cystic Fibrosis Research Institute is outdated and the overall rating may not be representative of its current operations. Please check with the charity directly for any questions you may have.
Cystic Fibrosis Research Institute has earned a 93% for the Accountability & Finance beacon. See the metrics below for more information.
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
This Accountability & Finance score represents IRS Form 990 data up until FY 2019, which is the most recent Form 990 currently available to us.
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Full Credit
Partial Credit
No Credit
Not Applicable
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Independent Voting Board Members ... (More) The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters. Our analysts check the Form 990 to determine if the independent Board members are a voting majority and also at least five in number. (Less) | |
| No Material Diversion of Assets ... (More) 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 – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
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| Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
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| Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) Making loans to related parties such as key officers, staff, or Board members, is not standard practice in the sector as it may divert the charity's funds away from its charitable mission and can lead to real and perceived conflict-of-interest problems. This practice is discouraged by sector trade groups which point to the Sarbanes-Oxley Act when they call for charities to refrain from making loans to directors and executives. And the IRS is concerned enough with the practice that it requires charities to disclose on their Form 990 any loans to or from current and former officers, directors, trustees, key employees, and other "disqualified persons." Furthermore, some state laws go so far as to prohibit loans to board members and officers. And although employees and trustees are permitted to make loans to charities, this practice can also result in real and/or perceived conflict of interest problems for the charity. Furthermore, it is problematic because it is an indicator that the organization is not financially secure. (Less) | |
| Documents Board Meeting Minutes ... (More) An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference. Charities are not required to make their Board meeting minutes available to the public. As such, we are not able to review and critique their minutes. For this performance metric, we are checking to see if the charity reports on its Form 990 that it does keep those minutes. In the future, we will also track and rate whether or not a charity keeps minutes for its committee meetings. (Less) | |
| Distributes 990 to Board Before Filing ... (More) Providing copies of the Form to the governing body in advance of filing is considered a best practice, as it allows for thorough review by the individuals charged with overseeing the organization. The Form 990 asks the charity to disclose whether or not it has followed this best practice. If the charity has not distributed its Form 990 to the board before filing, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| Does not Compensate Board Members ... (More) The IRS requires that any compensation paid to members of the charity's governing body be listed on the Form 990. Furthermore, all members of the governing body need to be listed whether or not they are compensated. It is not unusual for some members of the board to have compensation listed. The executive director of the organization frequently has a seat on the board, for instance, and is compensated for being a full time staff member. However, it is rare for a charity to compensate individuals only for serving on its Board of Directors. Although this sort of board compensation is not illegal, it is not considered a best practice. (Less) | |
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.
Sources Include: IRS Form 990 and organization's website
| Conflict of Interest ... (More) Such a 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 or director of the organization. Charities are not required to share their conflict of interest policies with the public. Although we can not evaluate the substance of its policy, we can tell you if the charity has one in place based on the information it reports on its Form 990. If the charity does not have a Conflict of Interest policy, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| Whistleblower ... (More) This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report any financial mismanagement. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. (Less) | |
| Records Retention and Destruction ... (More) Such a policy establishes guidelines for handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promotes data integrity. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. If the charity does not have a Records Retention and Destruction Policy, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| CEO Compensation Process ... (More) This process indicates that the organization has a documented policy that it follows year after year. The policy should indicate that an objective and independent review process of the CEO's compensation has been conducted which includes benchmarking against comparable organizations. We check to be sure that the charity has reported on its Form 990 its process for determining its CEO pay. (Less) | |
| Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) | |
Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.
Sources Include: IRS Form 990 and organization's website
| CEO Salary Listed on 990 ... (More) Charities are required to list their CEO's name and compensation on the Form 990. Our analysts check to be sure that the charities complied with the Form 990 instructions and included this information in their filing. (Less) | |
| Board of Directors Listed on Website ... (More) Our analysts check to see if the charity lists Board members on its website. Publishing this information enables donors and other stakeholders to ascertain the make up of the charity's governing body. This enables stakeholders to report concerns to the Board. Charity Navigator does not cross-check the Board members listed on the website with that reported on the Form 990, because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's Board members may have changed, and the charity typically reflects those more recent changes on the website. (Less) | |
| Key Staff Listed on Website ... (More) It is important for donors and other stakeholders to know who runs the organization day-to-day. Charity Navigator does not cross-check the leadership listed on the website with that reported on the Form 990 because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's leadership may have changed and the charity typically reflects those more recent changes on the website. In other words, since the Form 990 isn't especially timely, it can not be used to verify the leadership information published on the charity's site. (Less) | |
| Audited Financial Statements Listed on Website ... (More) We check the charity's website to see if it has published its audited financial statements for the fiscal year represented by the most recently filed IRS Form 990. It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. We currently rate charities on whether or not they publish their audit on their website. (Less) | |
| Form 990 Available on Website ... (More) We check the charity's website to see if it has published its most recently filed IRS Form 990 (a direct link to the charity's 990 on an external site is sufficient). It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. (Less) | |
Full CreditPartial CreditNo CreditNot ApplicableLiabilities to Assets Ratio - 1.50% - 10/10 ptsLiabilities to Assets Ratio - 1.50% - 10/10 pts
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).
Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.
Source: IRS Form 990
Working Capital Ratio - 1.96 years - 10/10 ptsWorking Capital Ratio - 1.96 years - 10/10 pts
Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Efficiency - $0.11 - 7.5/10 ptsFundraising Efficiency - $0.11 - 7.5/10 pts
The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.
Source: IRS Form 990
Administrative Expense Ratio - 5.50% - 10/10 ptsAdministrative Expense Ratio - 5.50% - 10/10 pts
As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Fundraising Expense Ratio - 12.30% - 7.5/10 ptsFundraising Expense Ratio - 12.30% - 7.5/10 pts
This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Program Expense Ratio - 82.10% - 9.17/10 ptsProgram Expense Ratio - 82.10% - 9.17/10 pts
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).
This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.
Source: IRS Form 990
Program Expense Growth - 5.27% - 6.27/10 ptsProgram Expense Growth - 5.27% - 6.27/10 pts
Organizations that demonstrate consistent annual growth in program expenses are able to outpace inflation and thus sustain their programs year to year. These organizations also supply givers with greater confidence by maintaining broad public support for their programs. We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.
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 this organizations key compensated staff members as identified by our analysts. 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
Siri Vaeth, Executive Director
$80,391 (5.97% of Total Expenses)
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2019
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
Activities:
Scientific research (diseases) (BMF activity code: 161)
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 (Cystic Fibrosis Research Institute) or EIN (510169988) in the 'Search Term' field.
Not Currently Scored
Cystic Fibrosis Research Institute 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.
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Cystic Fibrosis Research Institute reported its largest program on its FY 2019 Form 990 as:
Spent in most recent FY
Percent of program expenses
TO FUND CYSTIC FIBROSIS RESEARCH, PROVIDE EDUCATION AND PERSONAL SUPPORT, AND TO SPREAD AWARENESS OF CYSTIC FIBROSIS, A LIFE THREATENING GENETIC DISEASE.
Cystic Fibrosis Research Institute 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.
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Cystic Fibrosis Research Institute has earned a 100% for the Leadership & Adaptability beacon. See the metrics below for more information.
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.
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Full CreditPartial CreditNo CreditNot ApplicableMission - 10/10 ptsMission - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
To be a global resource for the cystic fibrosis (CF) community while pursuing a cure through research, education, advocacy, and support.
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
To find a cure for cystic fibrosis (CF) while enhancing quality of life for the CF community.
Source: Nonprofit submitted responses
Goals - 20/20 ptsGoals - 20/20 pts
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: RESEARCH: Ensuring Research Will Continue Toward a Cure (Innovative research to increase understanding of CF, broaden treatment options, improve quality of life, and expand the search for a cure.)
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: ADVOCACY: Engaging the National CF Community, Industry and Funders in Advocacy and Awareness Efforts that Increase Access to Therapies, Research Funding, and Quality of Life
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Three: EDUCATION AND SUPPORT: Creating Innovative and Responsive Education and Support Programs for the National CF Community
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
CFRI invests in leadership development on many fronts, from our Board of Directors to our community members who are impacted by cystic fibrosis. Over the past 12 months we have offered numerous training opportunities to CFRI Board Members, staff, committee members, and community members to advance people’s ability and confidence to assume leadership roles within the organization. We provided trainings on Inclusive Language, and Recognizing and Addressing One’s Unconscious Biases, as well as an Advocacy Bootcamp. The first two trainings expanded communication within our community, while demonstrating our commitment to inclusion and engagement with and by all members of our diverse community. The Advocacy Bootcamp provided skill building training to members of our community – at all levels of organizational involvement – to empower them to participate in CFRI’s advocacy efforts. Through annual training, advocates are cultivated and taking the lead in their communities and states.
Mobilizing for Mission - 15/15 ptsMobilizing for Mission - 15/15 pts
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
CFRI sent multiple action alerts and partnered with other rare disease groups to engage our community on issues emerging from COVID-19, including discriminatory State and Federal Emergency Plans/Health Crisis Standards that would de-prioritize those with advanced lung disease and/or CF should medical rationing be necessary. CFRI joined with other disease groups to support push for federal expansion of paid family medical leave for people with chronic conditions and their caregivers; continued coverage for telehealth services; and prohibition of co-pay accumulator programs and surprise medical billing. CFRI strengthened ties and alliances with our cystic fibrosis organizational partners in the Cystic Fibrosis Engagement Network; national rare disease organizations (EveryLife Community Congress, NORD); disability groups; California Chronic Care Coalition; Chronic Care Collaborative; and with our partner organizations in the American Thoracic Society Public Advisory Roundtable.
Adaptability Story - 30/30 ptsAdaptability Story - 30/30 pts
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
Last year marked another year of programmatic growth for CFRI, as we addressed the emerging needs of the CF community in response to the pandemic. CFRI underwrote therapy sessions for individuals with CF across the country and/or their immediate family, resulting in a statistically significant reduction in depression and anxiety symptoms. CFRI offered a weekly virtual Support Group for CF and COVID-19 related stress and anxiety. Facilitated by a CF psychiatrist, the group was attended by people from across the U.S. and globe. Facilated by social workers, CFRI provided monthly virtual Support Groups for Adults with CF, Caregivers of children with CF, and Parents/Spouses/Partners of Adults with CF. CFRI also hosted two virtual retreats: a CF Summer Retreat, attended by adults with CF and their friends and families; and a retreat for mothers of children/adults with CF. Both provided resources, psychosocial support and connection to peers; evaluations showed measurable decrease in symptoms of depression and anxiety. In addition, CFRI hosted a fully virtual National CF Education Conference, where experts in the field of CF presented the latest in research and clinical practice to more than 500 members of the global CF community. Evaluations found that 85% of participants improved their knowledge of CF and treatment options. CFRI joined with other disease groups to support push for federal expansion of paid family medical leave for people with chronic conditions and their caregivers; continued coverage for telehealth services; and prohibition of co-pay accumulator programs and surprise medical billing. Cystic fibrosis impacts people of all races and ethnicities. CFRI holds principles of equity, diversity and inclusion at the forefront in all that we do. CFRI is determined to advance research in pursuit of a cure, while providing meaningful programs to our national and international CF community.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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