GOLD2023

Cystic Fibrosis Research Institute

aka CFRI   |   Palo Alto, CA   |  www.cfri.org

Mission

Cystic Fibrosis Research Institute (CFRI) is a 501(c)(3) charitable organization founded in 1975, that funds innovative cystic fibrosis (CF) research and offers education, advocacy and psychosocial support programs and services to those with CF, as well as their families and caregivers. Our mission is to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support. Our vision is to find a cure for cystic fibrosis while enhancing quality of life for the CF community.

Ruling year info

1975

Executive Director

Siri Vaeth

Main address

1731 Embarcadero Road, Suite 210

Palo Alto, CA 94303 USA

Show more contact info

EIN

51-0169988

NTEE code info

Birth Defects (G20)

Birth Defects, Genetic Diseases Research (H20)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Cystic Fibrosis Research Institute seeks to find new therapies – and ultimately a cure – for cystic fibrosis, (CF) a rare, genetic, progressive, and life-limiting disease. CF has been diagnosed in 40,000 people in the U.S with approximately 1,000 new cases diagnosed annually. Most known for causing progressive lung disease, cystic fibrosis impacts all organ systems, including the liver, GI system, sinuses, and reproductive system. Sinus polyps, liver disease, bowel blockages, and reproductive health issues are common. Nearly all men with CF are infertile. CF obstructs the pancreas, preventing digestive enzymes from breaking down food and absorbing vital nutrients, which can lead to malnutrition and osteoporosis. Over 50% of adults with CF develop CF–related diabetes. Cystic fibrosis impacts people of all races and ethnicities. Newborn screening may fail to identify babies with mutations that are more common among people of color. Early diagnosis and treatment is key to survival.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Cystic Fibrosis Educational Programs

We host a national cystic fibrosis educational conference, attracting international speakers and participants from across the country. This weekend conference brings together those impacted by cystic fibrosis (CF) – including patients and families – with CF scientists, clinicians and experts in the field of CF from across the United States. Conference features include:

1. Updates on new therapies and vital CF-related topics addressed by nationally renowned presenters
2. Access to pharmaceutical and medical technology representatives
3. Support Groups and Workshops
4. Receptions, awards & networking with CF community peers

CFRI issues two print newsletters per year (including a Spanish language version), free of charge to over 14,500 constituents, and a weekly e-newsletter to all in our database.

CFRI funds two cutting-edge cystic fibrosis research programs. The nationwide New Horizons Research Campaign funds promising new cystic fibrosis (CF) research projects in academic and hospital institutions. Supporting research of the highest scientific quality, the NH program also endeavors to fund those applications with the greatest relevance to finding improved treatments or a cure for CF.

The Elizabeth Nash Memorial Fellowship (ENMF) was inaugurated in 1999 to provide annual funding to Post-Doctoral Fellows engaged in CF-related research at academic and hospital institutions nationwide and encourage collaborative research and communication between the institutions and PI’s. The fellowship is named in memory of geneticist Elizabeth Nash, who had CF and served as CFRI’s RAC Chairperson.

CFRI also holds two annual retreats: a Mothers Retreat and a Summer Retreat. CFRI hosts the Mothers Retreat for mothers of children & adults diagnosed with cystic fibrosis, in recognition of the vital role that mothers have in the care of their loved ones. Studies show that mothers of children with cystic fibrosis have extremely high rates of anxiety and depression, and that this may have a direct impact on their children’s adherence to their medical regimen. Through educational presentations, therapeutic art and journaling workshops, yoga, support groups, and the sharing of CF resources, women who share the CF path leave the weekend better prepared for the challenges presented by the disease. Embrace offers an opportunity for all participants to connect and rejuvenate. Evaluations of Embrace participants show that the weekend is extremely effective in lowering rates of depression and anxiety, and provides mothers with educational resources and strategies to utilize upon their return home.

The Summer Retreat provides a safe and welcoming environment, created to enhance education, positive coping skills, and social support for people who share common experiences with CF. Evaluations from previous Retreat attendees show that it successfully provided new information about CF therapies and treatments, improved psychosocial health, and provided resources and strategies for coping with the daily challenges of CF. CFRI provides on-going support groups for teens and adults with CF and for parents and caregivers of children with CF, therapeutic one-on-one counseling for persons with CF and their family members, and MIndfulness Based Stress Reduction classes.

CFRI seeks to engage the national cystic fibrosis (CF) community, industry and funders in advocacy and awareness efforts, that increase quality of life for those impacted by CF. We oversee and provide an information-based website which is accessed by over 8,000 people each month, and provide direct information and referral to all in our community. Though an independent, free-standing organization, we serve constituents in all 50 states and several foreign countries.

Population(s) Served
People with diseases and illnesses

Funding cystic fibrosis research in academic institutions throughout the county,

Population(s) Served
People with diseases and illnesses

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.

Population(s) Served
People with diseases and illnesses

This weekend conference brings together those impacted by cystic fibrosis (CF) – including patients and families – with CF scientists, clinicians and experts in the field of CF from across the United States.

Population(s) Served
People with diseases and illnesses

The 2019 CF Summer Retreat provides a safe and welcoming environment, created to enhance education, positive coping skills, and social support for people who share common experiences with CF. Evaluations from previous Retreat attendees show that it successfully provided new information about CF therapies and treatments, improved psychosocial health, and provided resources and strategies for coping with the daily challenges of CF.

Population(s) Served
People with diseases and illnesses

Bi-annual newsletters in both English and Spanish, providing information on current therapies, treatments and research of cystic fibrosis.

Population(s) Served
People with diseases and illnesses

Where we work

Awards

Hans Wessel "Lifetime Commitment to Cystic Fibrosis" 2011

Cystic Fibrosis Institute

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

EDUCATION: The Cystic Fibrosis Research Institute (CFRI) seeks to provide vital educational resources to a diverse CF community, including virtual conferences, podcasts, informational publications and social media-based information and resources, including:

RESEARCH: CFRI seeks to fund innovative CF research at universities and medical institutions throughout the United States that will advance our understanding of the disease, lead to new therapies, and ultimately find a cure for cystic fibrosis.

SUPPORT: CFRI seeks to provide psychosocial support programs and services so as to connect our diverse community and improve health and quality of life.

ADVOCACY and AWARENESS: CFRI seeks to raise awareness of cystic fibrosis, a rare disease, among the general population, including its impact upon people of all races and ethnicities. Through advocacy efforts on the state and federal level, CFRI seeks to create change that positively impacts the CF and rare disease communities.

EDUCATION: CFRI provides vital educational resources to a diverse CF community, including virtual conferences, podcasts, informational publications and social media-based information and resources, including:
• The annual National CF Education Conference, where renowned experts in the field of CF present the latest in research and clinical practice to over 500 members of the global CF community, including adults with CF, parents, medical caregivers, researchers, and pharmaceutical/medical technology representatives;
• “CF Community Voices,” a video podcast series created by and for the CF community, featuring personal and professional experts in the field of CF and addressing vital CF-related issues;
• “CFRI Community” and “CFRI Comunidad,” our printed newsletters, are produced and distributed to homes and health centers across the globe; a weekly informational eNewsletter is sent to 15,500 people.

RESEARCH: CFRI has funded approximately $11 million in innovative CF research at universities and medical institutions throughout the United States.
• Our investment in new ideas has enabled researchers from varied scientific and clinical disciplines to bring innovative perspectives to the study of the disease. CFRI-funded research has led to significant breakthroughs that bring us closer to a cure, including research that provided the proof-of-principle which led to the development of today’s promising CFTR modulator therapies.

SUPPORT: CFRI supports and connects our diverse community.
• The CF Quality of Life Program, created in response to the high rates of depression and anxiety found among the CF community, includes online Mindfulness Classes, individual therapy services, and monthly support groups for the CF community.
• Annual retreats for adults with CF and mothers of children of CF enable members of the CF community to participate in activities that enhance coping skills, disease knowledge and quality of life.
• CFRI’s Wellness Initiative provides online classes at no charge to the CF community including yoga, physical therapy, and CF specific strength building.

ADVOCACY: CFRI seeks to create change that positively impacts the CF and rare disease communities.
• CFRI educates the CF community and decision makers about issues that impact those with CF, including access to services and medications, the need for increased CF research funding, and the need for modern regulatory infrastructure that promotes the development and delivery of innovative medicines.
• CFRI creates and distributes resources that educate others about the racial and ethnic diversity of the cystic fibrosis community and the need for greater awareness to aid in early diagnosis and treatment.
• CFRI works with other CF-related and rare-disease organizations to encourage access to therapies, incentives for rare disease drug development, and fast tracking of new drugs.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

Cystic Fibrosis Research Institute
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Cystic Fibrosis Research Institute

Board of directors
as of 09/09/2023
SOURCE: Self-reported by organization
Board chair

Mr. William Hult

Retired

William Hult

Jessica Martens

Oscar Flamenco, CPA

Douglas Modlin, PhD

Francine Bion

Elyse E Goldberg

Arek Puzia, CFP, CPA

Julie Desch, MD

Richard D. Moss, MD

Zoe Davis, NP

Colleen Dunn, MS, RT, CCRD

Jean Hanley, MD

Ahmet Uluer, DO, MPH

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    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
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 9/8/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 09/02/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.