FOUNDATION FOR SARCOIDOSIS RESEARCH

aka FSR   |   Chicago, IL   |  www.stopsarcoidosis.org

Mission

The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $6 million in sarcoidosis-specific research efforts.

Ruling year info

2012

Chief Executive Officer

Mary McGowan

Main address

1820 West Webster Avenue Suite 304

Chicago, IL 60614 USA

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EIN

36-4378232

NTEE code info

Specifically Named Diseases Research (H80)

Specifically Named Diseases (G80)

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

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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?

FSR Advocacy Program

Patient Advocates are the heart of what FSR does. Through our Advocacy Program, we provide an opportunity for people to join us as leaders in a way that fits their lives and availability. From supporting their peers one-on-one, sharing their stories and empowering their communities, spreading awareness far and wide, in whatever they do, they are leaders. FSR believes in our Patient Advocate community and in order to support our amazing leaders, we provide exclusive trainings arming our Advocates with the tools and skills they need to a leader in the space.


Population(s) Served
People with diseases and illnesses
Adults

The FSR Clinical Studies Network brings together an international consortium of world-renowned medical institutes and researchers for unprecedented collaboration in studies and drug trials toward the treatment of sarcoidosis. The goals of the network will be to collaborate for studies, test the efficacies of treatment approaches, measure the impact of re-purposed drug treatments, and rapidly screen new promising compounds that emerge from biomedical research, significantly decreasing the time and amount of money needed to develop them.

The development of the FSR Clinical Studies Network provides a forum to address a range of important but unanswered questions in sarcoidosis, facilitates a move towards broader consensus about clinical endpoints, and enables pharmaceutical industry entrance into the sarcoidosis space with less perceived risk.

Population(s) Served
Adults

The FSR Patient Registry, FSR-SARC, is an IRB-approved collection of longitudinal patient data via our on-line state-of-the art patient registry tool, a HIPAA-compliant hosting facility that provides a secure environment to protect properly consented de-identified patient information. The registry is designed as an extensive online-based questionnaire that allows for patient and/or patients’ caretakers to enter information on patient demographics, medical history, familial history, organ-specific disease details, treatment history, and elements that indicate the burden of the disease on the patient’s quality of life. It is comprised of 87 questions collaboratively developed by the FSR Scientific Advisory Board. It is accessible through the FSR website, although hosted on a contracted third-party highly secured platform. The outreach is global; while currently provided in English, the registry will soon expand to other languages.

Population(s) Served

The FSR Pilot Grant aims to support smaller scale or pilot research projects, which can be supported either singularly by FSR or through a partnership with additional funders. The FSR awards a limited number of grants, totaling $25,000. In assessing applications, we look for strength in overall strategy, methodology, and analysis. Proposals are encouraged from investigators across a variety of disciplines, submitting projects which will lead to direct and significant impact upon sarcoidosis research.

Population(s) Served

The annual Global Virtual Patient Summit is an interactive, educational, and networking event for sarcoidosis community bringing together world-renowned expert speakers to deliver comprehensive education around disease manifestations, research, and clinical trials. The summit also offers networking opportunities for the community through chat boards, virtual meeting spaces, and messaging.

Population(s) Served

The Foundation for Sarcoidosis Research (FSR) launched the Ignore No More: African American Women & Sarcoidosis (AAWS) Campaign to address these disparities by engaging our sarcoidosis community – patients and providers – to better understand how sarcoidosis impacts African American women. Since launching the campaign, FSR has established a 15 Member Patient Advisory Committee, 4 Member Clinical Advisory Committee, and has been invited to present at International Speaking Engagements.  By raising awareness, FSR hopes to improve diagnosis, treatment, and outcomes for this population.

Population(s) Served

The Global Sarcoidosis Clinic Alliance is a member program consisting of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. Through this initiative, we aim to ensure that sarcoidosis patients in every community have access to information, education, clinical trials, and patient support services, identify, acknowledge and support clinicians through networking opportunities/forums that enable learning, sharing and advancements in finding a cure and in continuity of care, accelerate research through FSR’s global assets and funding, structure research initiatives with a strategic approach driven by measurable data and insights.



Population(s) Served
Adults
Adults
Adults
Adults
Adults

Where we work

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.

Finding a Cure
FSR provides funding and collaborations for research and initiatives which focus on the understanding of sarcoidosis, addresses the causes of the disease, counters the suffering of patients, and advances the potential for a cure.

Educating and Resourcing Patients and the Public
We are committed to informing the public about the disease and the dire need for increased funding, as this will in turn advance research and an understanding of the disease.

FSR believes in the power of many to join forces for true game-changing results in sarcoidosis research. The quality of life – and life itself – of thousands of patients depends on a true collaborative process. Only then will we see true results.

Finding a Cure: Through collaborations and partnerships with the pharmaceutical industry, biotech companies, medical institutes and professionals, academic institutes, researchers, and patients from across the globe, FSR is producing game-changing initiatives toward a cure. To date, FSR has fostered more than $1.5 million in sarcoidosis-specific research. In the years ahead, the Foundation looks forward to increasing our investment to find innovative breakthroughs which will provide treatments, therapies and a cure for the disease.

Educating and Resourcing Patients and the Public: Patients can be KEY elements in progress toward better treatments and a cure! FSR educates and connects patients with opportunities to become involved by becoming knowledgeable about sarcoidosis research. This includes participating in clinical trials, tissue donation programs, patient registries and shared data for research. FSR also offers annual conferences, webinars and comprehensive educational materials for people across the globe living with sarcoidosis, and connects patients to each other for support and enabling a larger impact. More than 20,000 members from all 50 states and nearly 80 countries have joined our free Stop Sarcoidosis Online Support Community. Thousands more are helped through in-person support groups under the umbrella of FSR.

FSR provides funding and collaborations for research and initiatives which focus on the understanding of sarcoidosis, addresses the causes of the disease, counters the suffering of patients, and advances the potential for a cure. Through collaborations and partnerships with the pharmaceutical industry, biotech companies, medical institutes and professionals, academic institutes, researchers, and patients from across the globe, FSR is producing game-changing initiatives toward a cure.

FSR has fostered over $1.5 million in direct grants to sarcoidosis-specific research. In addition, the FSR Scientific Advisory Board developed an ambitious Scientific Research Agenda in 2014 that identifies five specific areas of focus to help fill the gaps that exist in the sarcoidosis field. Our goal is to have promising therapies move quickly from the laboratory to the patient, and we do so through collaborations and strategic funding.

Here is a much abbreviated snapshot of the Scientific Research Agenda and the progress made to date since its initial inception in 2014:

• Animal Model – Major outreach in place to secure funding for this critical discovery.
• Patient Registry – Currently over 2,000 patients registered. We are enrolling thousands of patients represented worldwide to inform researchers on various elements of the disease.
• End Point Development – Discussions with NIH, FDA, WASOG, and AASOG members and key players underway; full plan for FSR investment and input to be completed in 2015.
• Clinical Studies Network – Launched in 2015, this 8-member consortium brings together an international partnership of world-renowned medical institutes and researchers for unprecedented collaboration in studies and drug trials toward the treatment of sarcoidosis.
• Patient Resource & Education Program – Expanded resources and tools including: a new suite of patient conferences, a treatment protocol, a physicians outreach program, a physicians directory, a new sarcoidosis brochure, a sarcoidosis online community, social media initiatives, and more.

Financials

FOUNDATION FOR SARCOIDOSIS RESEARCH
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Operations

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

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FOUNDATION FOR SARCOIDOSIS RESEARCH

Board of directors
as of 07/11/2022
SOURCE: Self-reported by organization
Board chair

Louise M. Perkins, PhD

No affiliation

Craig Lipset

Former Head of Clinical Innovation at Pfizer

Mary Cobb

PatientVue, LLC

Jim Davis

Amazon Web Services

Leslie Serchuck, MD

Children's Hospital of Philadelphia

Rev. Michael Walrond, Jr.

First Corinthian Baptist Church

Yvette Cozier, Dsc, MPH

Boston University School of Public Health

Emerson Hall, Jr., PhD

National Medical Association

Heidi Junk

Executive Leadership Coach, Selas Solutions

Michael Kaplan

Melanoma Research Alliance

Jeffrey Raich

Moelis & Company

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/6/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data