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Cystic Fibrosis Research, Inc. Organization Name provided in the GuideStar Exchange* as of 09/02/2014: Cystic Fibrosis Research, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: CYSTIC FIBROSIS RESEARCH INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  CFRI
Palo Alto, CA
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
This organization is a Silver-level GuideStar Exchange participant, demonstrating its commitment to transparency.

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Cystic Fibrosis Research, Inc. Organization Name provided in the GuideStar Exchange* as of 09/02/2014: Cystic Fibrosis Research, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: CYSTIC FIBROSIS RESEARCH INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: CFRI
Physical Address: Palo Alto, CA 94303 
EIN: 51-0169988
Web URL: www.cfri.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G20 Birth Defects
H Medical Research
H20 Birth Defects, Genetic Diseases Research
Year Founded: 1975 
Ruling Year: 1975 


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Mission Statement

Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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GuideStar Exchange - Silver Participant What is this?
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Annual Revenue & Expenses (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

Total Revenue $1,016,670
Total Expenses $814,472

Revenue & Expenses (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

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Balance Sheet (IRS Form 990)

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GuideStar Exchange - Silver Participant What is this?
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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GuideStar Exchange - Silver Participant What is this?
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Leadership (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Mrs. Sue H Landgraf

Term:

Since July 2013

Board Chair (GuideStar Exchange,
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September 2014)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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September 2014)

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Board Leadership Practices (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)
?

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Yes
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Yes
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Yes
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Yes
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in September 2014

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GuideStar Exchange - Silver Participant What is this?
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Programs

Program: Cystic Fibrosis Educational Programs (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Budget:
$552,945
Category:
Animal Control
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

We host a national cystic fibrosis family educational conference, attracting international speakers and participants from across the country. We issue three newsletters per year, free of charge to over 14,500 constituents. We also hold an annual day retreat for the CF community. We provide on-going support groups for teens and adults with CF and for parents and caregivers of children with CF. We oversee and provide an information based website which is accessed by over 8,000 people each month. We provide direct information and referral to all in our community.

Program Long-Term Success:

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Program Success Monitored by:

Program Success Examples:

Program: New Horizons Research (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Budget:
$150,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Disabled, General or Disability Unspecified

Program Description:

Funding cystic fibrosis research in academic institutions throughout the county,

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Elizabeth Nash Memorial Fellowship (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Budget:
$160,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Disabled, General or Disability Unspecified

Program Description:

We fund CF research in the San Francisco Bay region and San Diego currently supporting 4 post-doctoral fellows and projects in well known academic institutions.

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Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CF Discovery Series (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Budget:
--
Category:
Animal Control
Population Served:
None
None
None

Program Description:

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CFRI National CF Family Education Conference (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Budget:
--
Category:
Animal Control
Population Served:
None
None
None

Program Description:

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CFRI Teen & Adult Retreat (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
September 2014)

Budget:
--
Category:
Animal Control
Population Served:
None
None
None

Program Description:

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

GuideStar Exchange - Silver Participant What is this?
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Impact Summary from the Nonprofit

What sets CFRI apart from other CF organizations is our commitment to provide relevant educational, advocacy and personal support to those living with cystic fibrosis and their families. It has been shown that informed and knowledgeable patients maintain healthier lives. We believe that the information and assistance that CFRI offers can help reduce much of the emotional and physical distress associated with this prevalent, life threatening genetic disease.
GuideStar Exchange - Silver Participant What is this?
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

Reviews

Organization Data Available

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  • Financial Data for
  • Financial Charts for
  • Forms 990 for
  • Forms 990T for
  • Audited Financial Statement for
  • Annual Reports for
  • Letter of Determination
  • Form 1023 / 1024
  • Board Members
  • Officer, Director and/or Highest Paid Employee data for


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