Foundation for Sarcoidosis Research


1820 W. Webster Avenue
Suite 304
Chicago, IL 60614
312-341-0500
http://www.stopsarcoidosis.org


   

TRAIN Inventory Profile

Mission
Strategy/Approach
Research Portfolio
Financials
Key Accomplishments
Leadership
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Mission

The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has funded numerous domestic and international research efforts and has worked diligently to provide resources to thousands.

Strategy/Approach

FSR provides funding and collaborations for research and initiatives that 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, medical professionals, academic institutes, researchers and patients from across the globe, FSR is producing game-changing initiatives toward a cure. In the years ahead, the foundation looks forward to increasing its investment to find innovative breakthroughs that will provide treatments, therapies and a cure for the disease.

Research Portfolio

FSR has developed focus areas by identifying what gaps exist in sarcoidosis research where, if filled, could result in the maximum impact. The foundation places strong emphasis on translational research, which seeks a faster route of translating findings in basic science to practical applications that enhance human health and well-being. With its focus on bridging the barriers to multi-disciplinary collaboration, FSR seeks to move “from bench to bedside,” or from laboratory experiments through clinical trials to actual point-of-care patient applications. It currently has funded over $1.5 million in research and development and launched a global patient registry. In addition, it has recently launched a million-dollar initiative to provide the start-up of a Clinical Studies Network to build data-sharing, multi-site trials and studies and consensus building among researchers.

Financials

Fiscal year 2014, year ending 12/31/14

  • Revenue: $582,067
  • Assets: $1,676,192
  • Grants: $3,191
  • Gifts Received: $514,963
  • Total Expenditures: $173,237

Key Accomplishments

To date, FSR has fostered more than $1.5 million in sarcoidosis-specific research.
Over 2,000 patients entered in the FSR Sarcoidosis Patient Registry, launched in 2014.
Launched Clinical Studies Network in 2015 with 8 initial sites.
More than 23,000 members from all 50 states and nearly 80 countries have joined our free Stop Sarcoidosis Online Support Community.

Leadership

FSR's Board of Directors, Scientific Advisory Board and Support Group Advisory Council bring together patients, clinicians and scientists to collectively aid in shaping policy directions for FSR. The FSR staff is comprised of a team of dedicated professionals with expertise in nonprofit management, development and the sarcoidosis research field. FSR embraces a nonprofit management model that values best practices in all elements of business, governance and communication. Governed by a Board of Directors, FSR develops a strategic plan every three years and maintains quarterly benchmarking and dissemination of results not only with the Board but also with donors via “Investor Reports”. It fully practices due diligence in all activities and seeks certifications and seals of achievement when applicable. The foundation complies with all nonprofit requirements at a federal, state and city level but also ensures that its practices in fundraising, communications, programming, content sharing, research collaboration, etc. are of the highest standards.

Staff

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  • Maintaining a patient registry or biobank
  • Partnering with industry
  • Strategic planning