Scleroderma Research Foundation
220 Montgomery Street, Suite 1411
San Francisco, CA 94104
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The mission of the Scleroderma Research Foundation (SRF) is to fund and facilitate the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma.
Founded in 1987 by patient advocate Sharon Monsky, the SRF began with a passionate commitment that lives on today: to use the power of collaborative medical research to find improved treatments and a cure for scleroderma. The SRF is the nation’s leading non-profit investor in scleroderma research, engaging scientists and clinicians from a variety of disciplines.
The SRF has four major tenets that guide its approach:
Establish a Network of Multidisciplinary Leaders
SRF recognizes that advancing a cure for a complex and poorly understood disease such as scleroderma demands a multidisciplinary approach. To this end, the SRF now invests more than $1.5 million annually in research grants to leading scientists and innovators in a variety of fields; facilitates collaboration among researchers, clinicians and industry; and partners with world-class medical institutions at the front lines of clinical care. The SRF has also been successful in attracting talent from diverse research backgrounds to work in scleroderma.
The SRF is dedicated to long-term fundamental discoveries in both biology and new technologies. The end goal is halting and even reversing tissue damage. The SRF employs multiple approaches:
- Vascular aspects
- Growth factor biology
- Novel mouse models
The SRF also supports the infrastructure necessary for future pilot therapeutic studies and a clinical network to enable efficient testing of emerging solutions.
The SRF invests in the most advanced scleroderma specialty Centers of Excellence where patients receive comprehensive care from physicians representing many specialties, clinicians can partner with frontline scientists, blood and tissue samples can be obtained and the next generation of experts can be trained to test new treatment strategies and advance standards of care.
Collaborative Patient-Centered Programs
In order to provide high-quality, easily accessible resources to patients, caregivers, family and clinicians, the SRF has developed a patient education initiative that includes webinars, an extensive digital library of articles, an e-newsletter and a research roundtable series that will launch in 2016.
The SRF has awarded over $20 million in research funding to exceptional scientists at institutions across the United States and in the United Kingdom. The SRF research portfolio is driven by projects with breakthrough potential. For example:
- research efforts to dissect molecular mechanism of the disease;
- validation of novel target discovery (proof of concept work);
- assessment of predictive biomarkers (molecular dissection of patient subsets) and;
- establishment and continued development of Scleroderma Centers of Excellence With a focus on driving novel treatment paradigms the SRF partners with these Centers and other tertiary care sites to develop biorepositories, databases and novel biomarker studies necessary to drug development.
- Interrogation of the Pathogenesis of Stiff Skin Syndrome: A Congenital Form of Scleroderma. The project focuses on understanding the process of excessive collagen production through the comprehensive study of Stiff Skin Syndrome. The SRF hopes for this work to inform the cause and treatment of more common forms of scleroderma.
- Defining Novel Autoantibodies and Associated Cancer Mutations in Scleroderma. The project seeks to build upon the recent discovery that some cases of scleroderma are likely to have been initiated during the body’s fight against cancer. Results of the study could change the way physicians evaluate and eventually treat autoimmune diseases like scleroderma, as well as uncover natural anti-cancer mechanisms that have been difficult to visualize in humans.
- Gene Regulatory Mechanisms in Scleroderma. The project seeks to explain why and how skin cells behave abnormally in scleroderma. This knowledge will benefit the design of new treatment strategies for scleroderma patients.
- Support the Development of New Technologies. A SRF-funded project introduced a new technology, ATAC-seq, which provides ultra-high resolution epigenetic analysis of blood with a very small volume of scleroderma tissue. This new technology is one million-fold more sensitive and one hundred times faster. Using this new tool, it is possible to visualize, for the first time, the gene switches that are altered in scleroderma. One important new insight is systematic difference based on gender in the way immune cells turn on genes, which may account for the female preponderance of scleroderma.
- GRASP (Genome Research in African American Scleroderma Patients). GRASP aims to discover new scleroderma-associated genes that indicate susceptibility and phenotype associated genes, The study is enrolling patients across the country at 19 sites. Results from this large scale study of patients will yield insights for all scleroderma patients and fuel further research.
The SRF has a yearly call for proposals to advance the understanding of the pathogenesis of scleroderma and to promote the design, development and pilot testing of hypothesis-driven innovative therapeutic approaches. The SRF encourages applications from scientists who have not previously worked on scleroderma, as well as those with substantial ongoing scleroderma-focused effort. Grant requests may be up to three years with an annual maximum award of $200,000.
The SRF is also dedicated to bringing talented early career scientists to the field of scleroderma research. Two-year postdoctoral fellowships in scleroderma research will be granted to candidates who have received their MD degree or PhD degree from a U.S. medical or graduate school or equivalent educational institution. In considering candidates, emphasis will be on the quality of the research proposal and demonstrated commitment to scleroderma research.
Fiscal year 2015, year ending 4/30/15
- Revenue: $2,475,454
- Assets: $3,162,131
- Grants: $1,528,500
- Gifts Received: $1,657,716
- Total Expenditures: $2,457,021
- The SRF recruited Howard Hughes Medical Institute Investigator (HHMI) Hal Dietz to study scleroderma. He has since established the first genetic model for scleroderma in a landmark 2013 article published by Nature.
- Breakthrough results from the lab of Antony Rosen (in collaboration with HHMI investigator Bert Vogelstein) at Johns Hopkins University which found evidence that cancer may trigger scleroderma. This discovery was published in Science in 2013.
- The SRF provided the original seed funding and sustaining support for the Johns Hopkins Scleroderma Center – which has grown to be one of the premier Centers in the country.
- The SRF has established the Stanford Scleroderma Center and Northern California Scleroderma Research Consortium (a collaboration between the departments of rheumatology and pulmonary at the Stanford School of Medicine and UCSF)
- The creation of a collaboration between the National Human Genome Research Institute (NHGRI), the Johns Hopkins Scleroderma Center, and the SRF to launch the Genomic Research in African American Scleroderma Patients (GRASP) Project, which leverages NIH resources to identify genes underlying scleroderma induction and/or progression in African-American patients. This project has accumulated over 1,000 patient records.
The SRF is governed by a Board of Directors led by Chairman Dr. Luke Evnin, a scleroderma patient and Managing Director of MPM Capital, a biotechnology venture capital firm. The research portfolio is guided by a Scientific Advisory Board chaired by Dr. Bruce Alberts, the 2014 recipient of the National Medal of Science, former editor- in- chief of Science and past President of the National Academy of Sciences.
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