FOUNDATION FOR SARCOIDOSIS RESEARCH

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

Mission

The Foundation for Sarcoidosis Research is the nation's leading nonprofit organization dedicated to finding a cure for this disease and improving care for sarcoidosis patients.

Ruling year info

2012

Interim Executive Director

Reading Wilson

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?

Patient Resource and Education Program (PREP)

Informed, engaged patients are CRITICAL to breakthroughs in disease research. We focus our efforts on educating patients on understanding the fundamental value they bring to clinical research, and connecting patients to the many opportunities to be key participants in the sarcoidosis research field. By specifically involving patients directly in medical breakthroughs, we hope to unlock key research findings.

The FSR Patient Resource Education Program (PREP) provides a specialized service to sarcoidosis patients. Through the following programs, FSR educates and informs patients, physicians, and other stakeholders:

Patient Registry – a longitudinal web-based patient registry including ongoing history, medical reports, diagnostics, and treatment information. This anonymous data will help researchers further understand the disease, treatment options, diagnostic capabilities, etc.
Clinical Trial Interest Indicator – enables patients to indicate clinical trial interest and maps where potential patients are located for researchers.
Clinical Trial Connector – lists open trials recruiting patients; provides links for applications for inclusion.
Patient Network Center – connects patients via the internet, phone, and in-person for networking and knowledge-sharing.
Treatment Protocol – a mobile app as well as a printable, web-based tool presenting treatment guidelines developed by physicians.
Physicians Directory – connects patients to physicians all over the globe.
Support Group Directory – identifies formal support groups around the world.
Patient Advocacy and Education Materials – provides disease-specific information about sarcoidosis, educating patients and increasing awareness and support.
Patient Conferences and Workshops – launched through collaborations and connections with medical providers, educational institutes, industry, patient groups, etc.
Treatment Options– a list of commonly used drugs to treat sarcoidosis.

Population(s) Served

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

In November 2014, FSR proudly launched the worldwide sarcoidosis patient registry entitled FSR-SARC (Sarcoidosis Advanced Registry Cures). 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

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 7/17/2020
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

Louie Hondros, DO

Rush University Medical Center

Kirk Allen

Sloan Valve Company

Mary Carroll

Artist, MEC

Jim Davis

Advera Health Analytics, Inc.

Azmi Nabulsi, MD, MPH

Entrepreneur in Residence (EIR) at Frazier Healthcare Partners

Mary Cobb

PatientVue, LLC

Azmi Nabulsi, MD, MPH

Entrepreneur in Residence (EIR) at Frazier Healthcare Partners

Leslie Serchuck, MD

Children's Hospital of Philadelphia

Rev. Michael Walrond, Jr.

First Corinthian Baptist Church

Andrea Wilson

Reading Wilson

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