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Scleroderma Research Foundation

The Scleroderma Research Foundation (SRF) is a United States-based 501(c)(3) nonprofit organization dedicated to accelerating medical research aimed at developing improved treatments and ultimately finding a cure for scleroderma, a rare autoimmune disease characterized by excessive collagen production leading to skin and organ hardening.^[1] Founded in 1987 by Sharon Monsky, a scleroderma patient who sought to unite scientists and leverage emerging technologies to combat the disease, the SRF has evolved into the nation's leading private investor in scleroderma research, channeling over 83% of its annual budget directly into scientific programs.^[2] The foundation's core mission emphasizes funding innovative studies on scleroderma's pathogenesis, including genetic, immunological, and fibrotic mechanisms, while promoting the design, development, and pilot testing of new therapies.^[3] Key initiatives include the CONQUER Registry, the first nationwide longitudinal patient registry for scleroderma, which facilitates data collection to advance clinical understanding; the GRASP Project, focused on genetic risk factors in African American patients; and the CONQUEST platform, the inaugural multi-arm clinical trial for rare autoimmune diseases like scleroderma-associated interstitial lung disease (SSc-ILD).^[2] Guided by a prestigious Scientific Advisory Board of top experts in rheumatology, immunology, genetics, and fibrosis, the SRF actively recruits and collaborates with leading researchers to foster breakthroughs.^[4] Beyond research, the SRF raises awareness and funds through high-profile events such as the annual Cool Comedy • Hot Cuisine gala, which has generated over $30 million since its inception to support grants and trials.^[2] It also provides resources for patients, including webinars on health management and participation opportunities in studies, while partnering with entities like Vie Ventures to expedite drug development for autoimmune conditions.^[1] Through these efforts, the foundation not only drives scientific progress but also supports the scleroderma community in navigating the disease's challenges.^[5]

History

Founding by Sharon Monsky

Sharon Monsky, a successful businesswoman and entrepreneur with an MBA from Stanford University and prior experience as a management consultant at McKinsey & Company, was diagnosed with systemic scleroderma in the early 1980s.^[6] Despite being told she had only two years to live, Monsky refused to accept a passive role in her illness and turned her professional acumen toward activism, determined to address the lack of research and awareness surrounding the rare autoimmune disease.^[7] Her personal battle with scleroderma, which hardens the skin and connective tissues, fueled a commitment to advancing scientific understanding and potential treatments.^[6] In 1987, Monsky founded the Scleroderma Research Foundation (SRF) in San Francisco, California, with the primary goal of funding innovative medical research to combat the disease. Operating initially from her living room, she prioritized research over support groups, believing that targeted investments in science offered the best path to a cure.^[6] The foundation's establishment marked a pivotal shift, uniting patient advocacy with scientific collaboration to accelerate progress against scleroderma.^[2] Monsky's early strategies emphasized leveraging her personal and professional networks to secure seed funding and build essential partnerships with leading scientists.^[6] With support from family and friends, she raised initial resources that enabled the SRF to launch its first grants and foster collaborations with institutions such as the University of California, San Francisco (UCSF), laying the groundwork for sustained research momentum.^[7] These efforts not only kickstarted the organization's operations but also positioned it to evolve into the largest nonprofit funder of scleroderma research in the United States.^[2] Monsky continued leading the SRF until her death on May 11, 2002, at age 48, from complications related to scleroderma, after nearly two decades of living with the disease.^[6] Her passing represented a profound loss but also a pivotal transition, as the foundation carried forward her vision under new leadership while honoring her foundational principles.^[2]

Growth and Key Milestones

Following its founding in 1987, the Scleroderma Research Foundation (SRF) experienced significant scaling during the 1990s, transitioning from a nascent organization to the largest nonprofit investor in scleroderma research in the United States. This period marked a pivotal expansion in operations and outreach, including the launch of its inaugural research grants, which initiated targeted funding for studies on scleroderma pathogenesis and potential therapies.^[2] A major leadership transition occurred in 2002 after the death of founder Sharon Monsky from scleroderma complications, yet the organization sustained its momentum under subsequent leadership, reinforcing its commitment to research-driven growth. By the early 2000s, the SRF established its Scientific Advisory Board, comprising leading experts in rheumatology, immunology, and fibrosis to guide funding priorities and evaluate proposals, which helped drive annual increases in research investments. This era solidified the SRF's position as the preeminent U.S. nonprofit in the field, with consistent growth in grant allocations reflecting heightened philanthropic support and strategic focus.^[2]^[8] Throughout the 2010s, the SRF emphasized collaborative networks to accelerate research progress, launching initiatives like the CONQUER Registry—a nationwide longitudinal study capturing patient data to inform clinical advancements, initiated in 2018—and the GRASP Project, aimed at understanding scleroderma in African American populations through targeted recruitment and analysis. These efforts fostered partnerships among U.S. investigators and institutions, enhancing data sharing and infrastructure for future studies.^[9]^[10] In 2023, the SRF announced the launch of the CONQUEST platform, an innovative multi-arm clinical trial for systemic sclerosis-associated interstitial lung disease (SSc-ILD), with IND clearance by December; enrollment began in 2024 across initial sites, expanding to 125+ sites in 24 countries by August 2025 to evaluate multiple therapies efficiently.^[3]^[11]^[12]^[13] By 2023, the SRF had committed over $44 million to scleroderma research since inception, underscoring its sustained expansion and impact as the leading funder in the sector.^[14]

Mission and Objectives

Core Mission Statement

Scleroderma is a rare autoimmune disease characterized by excessive collagen production, leading to fibrosis that hardens and tightens the skin and connective tissues, often affecting internal organs such as the lungs, heart, and digestive system.^[15] With an estimated 300,000 people affected in the United States, its rarity and heterogeneous progression—ranging from mild localized forms to aggressive systemic involvement—pose significant challenges for diagnosis, treatment, and research, and currently, no cure exists.^[15] The core 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.^[1] This mission emphasizes uniting leading scientists from diverse fields like immunology and genetics through collaborative platforms, such as the organization's Scientific Advisory Board, to accelerate discoveries.^[2] By leveraging advanced technologies and innovative approaches, the SRF addresses the disease's complexity, fostering breakthroughs that might otherwise be stalled by its rarity and the limited attention from traditional funding sources.^[2] As a philanthropy-driven organization, the SRF relies entirely on private donations for its research funding, with 100% of such support coming from charitable contributions rather than government grants, enabling flexible and targeted investments in high-impact projects.^[1] This model distinguishes the SRF by prioritizing rapid response to emerging scientific opportunities and maintaining a focus on patient-centered outcomes in the pursuit of transformative therapies.^[2]

Strategic Priorities

The Scleroderma Research Foundation (SRF) outlines its strategic priorities to accelerate the pace of scleroderma research and treatment development, emphasizing multi-disciplinary collaborations among experts in rheumatology, immunology, genetics, and fibrosis. These priorities include fostering partnerships through initiatives like the annual Science Workshop, which brings together researchers, scientific advisors, and industry leaders to drive innovative discoveries.^[4] A key focus is supporting early-career investigators via postdoctoral fellowships and Early Career Grants, enabling the next generation of scleroderma specialists to pursue high-impact projects and transition into dedicated research roles. Additionally, the SRF prioritizes underrepresented groups, such as African American patients who experience more severe disease manifestations, through targeted efforts like the GRASP Project in collaboration with the National Institutes of Health (NIH) and 23 U.S. scleroderma centers. This genomics initiative sequences patient DNA to identify genetic variations influencing disease severity and outcomes.^[4] To address scleroderma's research challenges—including low patient numbers and heterogeneous symptoms—the SRF commits to innovative approaches such as platform trials and patient registries. The CONQUEST trial, a phase 2 platform study for scleroderma-related interstitial lung disease, adapts oncology models to efficiently test multiple therapies across over 150 centers in more than 30 countries, enhancing global data collection and trial speed as of 2025. Complementing this, the CONQUER Registry serves as a longitudinal biosample repository with over 1,000 participants from 19 U.S. centers, tracking disease progression to enable personalized medicine and better understand symptom variability.^[16]^[9] Looking to the 2020s, the SRF aims to expand global partnerships, integrate advanced technologies like genomics and artificial intelligence (AI), and translate findings into clinical applications, including ongoing expansions like additional CONQUEST sites activated in 2025. Genomics efforts through GRASP and AI applications, such as those explored by investigator Michael Whitfield to predict treatment responses and disease trajectories, underscore this commitment to cutting-edge tools. Success is measured by the SRF's allocation of over 83% of its annual budget to research—the highest percentage among scleroderma nonprofits—ensuring maximal investment in these priorities.^[17]^[2]^[4]

Organizational Structure

Board of Directors

The Board of Directors of the Scleroderma Research Foundation (SRF) provides strategic governance and oversight to advance the organization's mission of funding innovative research toward a cure for scleroderma. Composed of leaders from diverse fields including medicine, business, law, and entertainment, the board ensures financial stewardship, shapes fundraising strategies, and maintains alignment with SRF's core objectives.^[18]^[19] Luke Evnin, PhD, has served as Chairman since 2002, following the death of SRF founder Sharon Monsky, bringing his expertise as a biotech venture capitalist and co-founder of MPM Capital to guide the foundation's growth and research investments.^[20]^[21] Evnin, who was diagnosed with scleroderma in 1998, assumed leadership during a pivotal transition period for the organization.^[22] Among the current board members, Omar Baker, MD, contributes medical expertise as Deputy Chief Medical Officer and Executive Vice President at UnitedHealth Group, with a background in pediatrics and healthcare innovation.^[23] Sharon Dobie, MD, a Professor Emeritus at the University of Washington School of Medicine and family medicine physician, joined following the death of her son from scleroderma complications in 2017.^[24] Susan Feniger, a founding board member since 1988, leverages her prominence as a celebrity chef, restaurateur, and philanthropist—known for co-authoring cookbooks and starring in Food Network's Too Hot Tamales—to support SRF's community initiatives.^[25] Regina Hall, an award-winning actress, joined after her mother's diagnosis with scleroderma in 2006, becoming personally invested in advancing research.^[26] Eric Kau, MD, serves as Clinical Assistant Professor of Urology at the Keck School of Medicine of the University of Southern California and Director of the USC Institute for Urologic Health.^[27] David Knoller, an award-winning producer and director diagnosed with scleroderma, joined in 2015 to advocate for the community.^[28] Violetta Merin, a New Jersey-based community leader and philanthropist, supports SRF's fundraising efforts.^[29] Mark Scher, a real estate investor and developer with over 35 years of experience, rejoined the board in 2025 amid momentum in scleroderma research.^[30]^[31] Dan Schimberg, motivated by a family member's experience with scleroderma since 2020, joined the board in 2025.^[32] Jeff Seaman, who joined in 2023, offers financial acumen from over two decades in financial services, including 14 years at JP Morgan Asset Management, motivated by his personal connection as a parent of a child with scleroderma.^[33] Deann Wright, JD, a board member since 2000, provides legal and former medical research perspectives as an attorney and community leader.^[34] The board also honors emeritus members and ambassadors who have provided long-term support. Dana Delany, an award-winning actress known for roles in television and film, became an SRF advocate in 1990 after meeting founder Sharon Monsky and portraying a scleroderma patient in the 1996 film For Hope; she now serves in an emeritus capacity.^[35] Bob Saget, the late comedian and actor famous for Full House, joined as an ambassador in 1991 and became a board member in 2003, raising over $25 million for research before his passing in 2022.^[36] This diverse composition enables the board to effectively oversee SRF's operations, with members' collective backgrounds in medicine, finance, law, and entertainment fostering robust fundraising and mission-driven decision-making.^[37]^[18]

Scientific Advisory Board

The Scientific Advisory Board (SAB) of the Scleroderma Research Foundation (SRF) comprises leading experts in fields relevant to scleroderma, including rheumatology, immunology, genetics, and fibrosis. Notable members include Bruce Alberts, PhD, Chairman and Professor Emeritus at the University of California, San Francisco; Hal Dietz, MD, Professor of Genetic Medicine at Johns Hopkins University School of Medicine; Dan Kastner, MD, PhD, Scientific Director at the National Human Genome Research Institute; Lloyd Klickstein, MD, PhD, CEO of Koslapp Therapeutics and rheumatologist with a background in biopharmaceutical research; Dan Littman, MD, PhD, Helen L. and Martin S. Kimmel Professor of Medical Sciences at New York University; Antony Rosen, MB ChB, BSc(Hons), Vice Dean for Research at Johns Hopkins University School of Medicine; and Bruce Wintroub, MD, Professor of Dermatology at the University of California, San Francisco and Chairman of the Dermatology Foundation.^[8] These individuals, many affiliated with prestigious institutions such as the National Institutes of Health and members of the National Academy of Sciences, provide specialized guidance on scleroderma's complex pathophysiology.^[8] The SAB plays a central role in directing SRF's research efforts by reviewing grant proposals, evaluating funded projects, and recommending allocations to advance innovative therapies toward a cure.^[8] It organizes the annual SRF Science Workshop, which convenes scientific advisors, investigators, applicants, and industry partners to discuss progress, foster collaborations, and assess emerging research opportunities in scleroderma.^[38] Through these activities, the board advises on strategic priorities, including the integration of cutting-edge approaches to accelerate breakthroughs in understanding and treating the disease.^[4] The SAB's rigorous evaluation process ensures that all SRF-funded research meets high standards of scientific excellence and innovation, prioritizing projects with the greatest potential impact on scleroderma patients.^[38] By leveraging the collective expertise of its members, the board has helped shape a focused research portfolio that addresses key gaps in fibrosis, immune dysregulation, and genetic mechanisms underlying the condition.^[8]

Research Initiatives

Grant Funding Programs

The Scleroderma Research Foundation (SRF) administers a competitive grant funding program to advance scleroderma research, primarily through investigator-initiated proposals that emphasize understanding disease pathogenesis and developing new interventions. These programs support early-career and established researchers, with a focus on fostering innovation in basic, translational, and clinical studies related to fibrosis, immunology, and other key mechanisms of the disease. Applications are welcomed from scientists new to the field as well as those with prior experience, ensuring broad participation in addressing unmet needs in scleroderma.^[39] Postdoctoral Fellowships target promising young investigators holding MD or PhD degrees from U.S. institutions, providing two-year support to conduct mentored research in scleroderma, often centered on basic science aspects like fibrosis or immunology. These fellowships require a letter from a sponsoring principal investigator and aim to build expertise in the field by allowing fellows to work alongside established researchers. Eligibility includes recent graduates seeking to dedicate time to scleroderma-specific projects, with proposals evaluated for scientific merit and alignment with SRF priorities.^[39]^[40] Early Career Grants, including the New Faculty Grant, support clinician-scientists and emerging investigators within seven years of their doctoral degree who are transitioning to independent research roles, with an emphasis on translational applications that bridge basic discoveries to patient care. These grants offer up to $75,000 annually for up to two years, enabling tenure-track faculty to pursue scleroderma-focused studies without the burden of extensive preliminary data requirements. This mechanism helps retain talent in the field by providing seed funding for innovative ideas with high potential for clinical impact.^[41] The SRF's grant programs operate on an annual cycle, with applications typically due in late winter—such as February 24, 2025, for funding starting in 2026—followed by rolling reviews through the fall and award notifications between June and September. Proposals are rigorously assessed by the Scientific Advisory Board based on criteria including scientific innovation, methodological feasibility, relevance to scleroderma pathogenesis, and potential to advance treatments or diagnostics; the board's expertise ensures alignment with strategic research gaps.^[39]^[41] Since its establishment in 1991, the SRF has invested over $55 million in research grants, demonstrating sustained commitment to accelerating progress against scleroderma. In recent years, the foundation has allocated over $6 million annually to support a portfolio of projects, funding around 15-20 grants per cycle to maximize impact across diverse investigative teams.^[3]^[42]^[19]

Major Research Projects

The Scleroderma Research Foundation (SRF) has spearheaded several landmark research initiatives to advance the understanding and treatment of scleroderma, with a focus on large-scale, collaborative projects that generate critical data and accelerate therapeutic development. Among these, the CONQUER Registry stands as a foundational effort, launched in 2018 as the first nationwide longitudinal patient registry and biosample repository for scleroderma in the United States.^[43] This initiative enrolls patients from 19 specialized U.S. scleroderma centers, collecting detailed clinical data on health status, disease progression, treatments, and outcomes during routine clinic visits to enable long-term tracking and refinement of disease subtypes for personalized care.^[9] As of 2025, the registry has over 1,000 participants, providing a robust dataset for epidemiological studies and biomarker discovery in systemic sclerosis (SSc).^[44] Complementing the registry, the Genome Research in African American Scleroderma Patients (GRASP) Project, initiated in 2018, addresses disparities in scleroderma outcomes through a targeted genomic study.^[45] Developed in collaboration with the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) and involving 23 U.S. academic centers, GRASP focuses on elucidating genetic factors contributing to the higher incidence, severity, and complications—such as interstitial lung disease (ILD) and pulmonary hypertension—observed in African American patients.^[4] By enrolling African American individuals with scleroderma and conducting genomic analyses, the project aims to identify risk variants and inform tailored interventions to improve equity in care.^[10] In 2023, the SRF launched the CONQUEST Trial, a pioneering phase 2 platform clinical trial designed to evaluate multiple investigational therapies for scleroderma-associated interstitial lung disease (SSc-ILD) in a single, adaptive framework.^[46] Announced on August 1, 2023, and with recruitment commencing in April 2024 following FDA Investigational New Drug clearance, CONQUEST operates across more than 150 global sites in over 30 countries, allowing simultaneous testing of agents like those from partners Sanofi and Boehringer Ingelheim against placebo to assess efficacy, safety, and pharmacodynamics.^[47]^[16] As of August 2025, over 125 sites were actively enrolling patients.^[13] This perpetual, multicenter, double-blind, randomized model—adapted from oncology paradigms—streamlines drug development for this rare disease by reducing time and costs while expanding to other scleroderma manifestations in the future.^[46] To foster synergy across these and other efforts, the SRF has convened annual Science Workshops since the mid-2000s, serving as a key forum for collaboration among funded investigators, Scientific Advisory Board members, applicants, and industry experts. The 2025 workshop, held in April, facilitated project presentations, progress reviews, and interdisciplinary brainstorming to align research priorities and accelerate breakthroughs in scleroderma pathogenesis and therapy. Held biannually or as intensive two-day gatherings, these workshops facilitate project presentations, progress reviews, and interdisciplinary brainstorming to align research priorities and accelerate breakthroughs in scleroderma pathogenesis and therapy.^[38]^[48]^[49]

Fundraising and Awareness Efforts

Signature Fundraising Events

The Scleroderma Research Foundation's (SRF) primary signature fundraising event is Cool Comedy • Hot Cuisine (CCHC), an annual gala that combines stand-up comedy performances, celebrity-hosted entertainment, and gourmet dining experiences to support scleroderma research.^[50] Launched in 1987, CCHC has become a cornerstone of the foundation's efforts, attracting high-profile talent and attendees in major cities to generate substantial funds dedicated exclusively to advancing scientific investigations into the disease.^[51] Over its nearly four-decade history, the event has raised more than $30 million, with 100% of net proceeds directed toward the SRF's research programs.^[52] CCHC typically features renowned comedians and performers, such as Nikki Glaser and Jeff Ross, alongside celebrity chefs preparing multi-course meals, live auctions, and interactive elements to engage participants.^[51] Longtime host and SRF board member Bob Saget, who joined in 1993 following his sister's diagnosis with scleroderma, elevated the event's profile through his involvement until his passing in 2022, after which it continued in his honor with hosts like Jimmy Kimmel and John Mayer.^[36] The 2024 edition, held in Los Angeles at the Fairmont Century Plaza, honored Mayer and Ross while raising $1.3 million, underscoring the event's ongoing success in mobilizing celebrity support for the cause.^[53] The 2025 installment, held on November 12 at the Edison Ballroom in New York City, raised more than $1.2 million.^[54] In response to the COVID-19 pandemic, CCHC adapted to virtual formats in 2020 and 2021, streaming performances from talents including Bill Burr, Ken Jeong, and Heidi Klum to broader audiences while maintaining its fundraising momentum.^[55] The event returned to in-person gatherings in subsequent years.^[52] This evolution reflects the foundation's commitment to innovative fundraising strategies that ensure continued support for scleroderma research amid varying circumstances.^[52]

Community and Patient Engagement

The Scleroderma Research Foundation (SRF) conducts awareness campaigns to educate the public, patients, and healthcare providers about scleroderma symptoms such as skin tightening, Raynaud's phenomenon, and joint stiffness, as well as diagnostic challenges like delayed identification due to overlapping conditions.^[5] These efforts include targeted initiatives like PAH Awareness Month in November, which promotes earlier diagnosis of pulmonary arterial hypertension—a common scleroderma complication—through informational resources and calls to action for community involvement.^[56] Similarly, during February's Raynaud's Awareness Month and Rare Disease Day, the SRF distributes materials highlighting vascular symptoms and the need for specialized care, partnering with industry leaders like Amgen and Merck to amplify reach and empower patients with knowledge.^[57]^[58] Patient forums and spotlights form a core of SRF's engagement, featuring personal stories to humanize the disease and foster connection. The annual Cure Crew program spotlights advocates who share their experiences to build empathy and understanding; for instance, athlete Greg Cohen, a scleroderma patient, has used his marathon running and the documentary Run Greg Run to illustrate living actively with the condition, inspiring others to recognize early signs.^[59]^[60]^[61] The SRF's "Collaborating for a Cure" Patient Forum, a free online event, provides a virtual space for patients, caregivers, and advocates to discuss wellbeing, with sessions featuring spotlights on individuals like Cohen to encourage peer support and visibility.^[62]^[63] Community programs extend support through accessible tools like free webinars on health management, emotional wellbeing, and navigating COVID-19 impacts for scleroderma patients, often co-hosted with collaborators to ensure comprehensive coverage.^[5] The SRF's eNews newsletter series delivers monthly updates with patient testimonials, resource guides, and tips for daily living, keeping the community informed and connected.^[64] To address underrepresented groups, initiatives such as the GRASP Project and surveys targeting people of color in rare diseases ensure diverse voices shape education and participation, while integration with the CONQUER registry allows patients to contribute input on their health journeys, enhancing personalized care and research relevance.^[19]^[9] These programs collectively aim to boost public knowledge of scleroderma and encourage active involvement in advocacy and research advancement.^[1]

Impact and Achievements

Contributions to Scleroderma Research

The Scleroderma Research Foundation (SRF) has invested more than $55 million in scleroderma research since its founding in 1987, making it the largest nonprofit funder of such efforts in the United States.^[3] This funding has supported over 100 research projects across diverse areas, including investigations into fibrosis mechanisms—such as the role of inflammatory pathways and tissue remodeling—and the identification of potential biomarkers for disease progression and response to therapy.^[65] These initiatives have resulted in numerous high-impact publications in journals like Cell and PNAS, advancing the understanding of scleroderma's pathogenesis and paving the way for targeted interventions.^[66] Key advances supported by SRF include contributions to genetic studies that have identified novel risk factors for scleroderma, particularly in underserved populations. For instance, the Genetic Repository for African American Scleroderma Patients (GRASP) project, a collaboration with the National Institutes of Health, has enrolled over 1,350 participants to analyze genetic variations associated with disease susceptibility and severity in African Americans, who face higher prevalence and worse outcomes.^[4] Additionally, SRF-funded work on complement cascade variations has explored these as potential risk factors for scleroderma-associated pulmonary arterial hypertension.^[65] While SRF did not directly fund the pivotal trials leading to tocilizumab's 2021 FDA approval for systemic sclerosis-associated interstitial lung disease, its broader support for early fibrosis and immunology research has complemented such developments in preserving lung function.^[67] SRF has trained dozens of early-career researchers through its postdoctoral fellowship grants and Early Career Grants, enabling them to specialize in scleroderma and establish independent labs worldwide.^[4] Many of these fellows now lead prominent research programs, contributing to global advancements in autoimmune and fibrotic diseases. Among nonprofits focused on scleroderma, SRF allocates the highest percentage of its budget to direct research funding, with recent reports showing over 80% to research and education programs.^[68] Furthermore, SRF's CONQUEST platform, initiated in 2023 with patient enrollment starting in 2024 as a global phase 2b clinical trial for scleroderma-associated interstitial lung disease, accelerates trial timelines by enabling simultaneous evaluation of multiple therapies against a shared placebo arm, potentially shortening the path from discovery to approved treatments by years; as of August 2025, it has opened over 125 sites across 24 countries.^[69]

Broader Organizational Influence

The Scleroderma Research Foundation (SRF) has actively collaborated with the National Institutes of Health (NIH) to advance scleroderma research priorities, including co-sponsoring a 2024 NIH workshop on systemic sclerosis (SSc) and chronic graft-versus-host disease (cGVHD) to foster cross-disciplinary dialogue and accelerate progress in overlapping autoimmune conditions.^[70] Additionally, SRF contributed to the NIH's Genome Research in African American Scleroderma Patients (GRASP) project, a partnership with the National Human Genome Research Institute aimed at addressing genetic diversity in rare disease studies.^[71] These efforts have helped elevate scleroderma within NIH strategic planning, as evidenced by the NIH-Wide Strategic Plan for Autoimmune Disease Research (fiscal years 2026–2030), launched in July 2025, which explicitly highlights scleroderma as a key focus for advancing understanding of immune dysregulation.^[72] SRF's awareness initiatives have significantly boosted public and medical recognition of scleroderma through high-profile celebrity involvement, notably actress Dana Delany, an emeritus board member who portrayed a scleroderma patient in the 1996 film For Hope and has since advocated via media appearances, including a 2008 CNN segment on the disease's challenges.^[35]^[73] These campaigns, combined with annual events like Cool Comedy Hot Cuisine, have generated widespread media coverage and increased patient enrollment in research, contributing to broader educational outreach within healthcare communities.^[74] In the rare disease landscape, SRF has served as a model for philanthropy-driven research acceleration, joining the Rare Disease Diversity Coalition in 2022 to promote equitable access and representation in clinical studies across conditions.^[75] Its global partnerships, such as those with biopharmaceutical companies including Sanofi and Boehringer Ingelheim, have expanded beyond U.S.-centric efforts by establishing the CONQUEST platform trial, which, as of August 2025, has over 125 sites across 24 countries to streamline testing of therapies for SSc-associated interstitial lung disease.^[76]^[13] Over the long term, SRF's integrated registries and trial infrastructures, including the CONQUER Registry launched in 2019, have shortened the path from research discovery to therapeutic evaluation by providing real-world data on over 1,000 patients, enabling faster recruitment and more efficient pilot studies for potential treatments.^[9]^[77] This approach has informed multinational trial designs, reducing development timelines for scleroderma interventions by facilitating data sharing and collaborative validation.^[16]

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Apply for a Grant for Scleroderma Research
The Scleroderma Research Foundation (SRF) funds research aimed at understanding the pathogenesis of scleroderma and promoting the design, development, and pilot ...
[33]
[PDF] Postdoctoral Fellowship Application
Postdoctoral Fellowship Application. Notes: • CV-related information ... Scleroderma Research Foundation. 220 Montgomery St., Suite 484. San Francisco ...
[34]
Molecular Pathogenesis and New Interventions in Scleroderma Forms
The Investigator-Initiated Research Grant (SRF01) provides support for a larger-scale project in scleroderma research to be performed by the named investigator( ...
[35]
1000 Participants Enrolled in CONQUER!
Jun 19, 2024 · We are honored to announce that CONQUER has enrolled its 1,000th participant!. In 2018, the SRF launched the CONQUER Registry (an acronym ...
[36]
You can also email the SRF for a free printed copy of the 2017 ...
Jan 5, 2018 · Dr. Fred Wigley (Johns Hopkins University) and Dr. Dan Kastner (National Human Genome Research Institute) talk about the GRASP project and the critical role ...
[37]
Introducing CONQUEST, a Groundbreaking Clinical Trial
Aug 1, 2023 · CONQUEST is an international, multicenter, randomized, double-blind, placebo-controlled, phase 2 platform clinical trial, and is the first of its kind in rare ...
[38]
Design of CONQUEST, a novel, randomized, placebo-controlled ...
Nov 5, 2024 · The Scleroderma Research Foundation CONQUEST platform clinical trial is the first of its kind in autoimmune diseases, using a model that was ...
[39]
The SRF's Annual Science Workshop Drives Research Collaboration
May 1, 2024 · Following the workshop, Scientific Advisory Board members help evaluate the progress and potential of each project. By lending their ...
[40]
Cool Comedy • Hot Cuisine - Scleroderma Research Foundation
Cool Comedy • Hot Cuisine (CCHC) is the Scleroderma Research Foundation's (SRF's) signature fundraising event, featuring some of the world's greatest comedians ...
[41]
Join Us in New York City | Cool Comedy • Hot Cuisine
Join us on Wednesday, November 12, 2025, at the Edison Ballroom in New York City for our signature fundraising event, Cool Comedy • Hot Cuisine.
[42]
Events | Scleroderma Research Foundation
The Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening ...Missing: September 1,
[43]
https://srfcure.org/news-and-updates/1000-participants-enrolled-in-conquer/
[44]
Announcing Cool Comedy • Hot Cuisine 2021 Performers ...
Bill Burr, Ben Folds, Nikki Glaser, Josh Groban, Regina Hall (SRF board member), Ken Jeong, Jimmy Kimmel, Heidi Klum, Loni Love, Joel McHale, Howie Mandel, Ms.
[45]
Shine a Light on PAH: Take Action This November
Nov 1, 2025 · By raising awareness, we can promote earlier diagnosis, better care, and greater support for people living with scleroderma-related PAH. There ...
[46]
Raynaud's Awareness Month + Rare Disease Day Resources
Jan 31, 2025 · February is an important month for the scleroderma community as we raise awareness for both Raynaud's Awareness Month and Rare Disease Day.
[47]
Industry Partnerships - Scleroderma Research Foundation
... event; Completely FREE registration for all attendees. Cool Comedy • Hot Cuisine. High-profile fundraising event hosted by Bob Saget for 30 years, now led by ...Missing: besides | Show results with:besides
[48]
Volunteer with Scleroderma Cure Crew
Create your own personal fundraising page and become a Fundraiser for a Cure. Whether you are raising funds in honor of a birthday, special occasion, or loved ...Missing: besides | Show results with:besides
[49]
Greg Runs Marathons to Find a Cure for Scleroderma
Jan 27, 2023 · Last weekend, Greg Cohen ran the Chevron Houston Marathon to raise funds for the Scleroderma Research Foundation—and set a half marathon ...
[50]
Scleroderma Documentary Spreads Awareness to New Audiences ...
It's called Run Greg Run and tells the incredible story of scleroderma patient Greg Cohen and his inspiring athleticism. At the premiere event, they helped ...
[51]
Welcome to Collaborating for a Cure, the SRF Patient Forum!
The mission of the Scleroderma Research Foundation (SRF) is to fund and facilitate the most promising, highest quality research aimed at improved therapies ...
[52]
Patient Forum: Cure Crew Advocate Spotlight - Greg Cohen (2023)
Jun 20, 2023 · ... scleroderma and uses his platform and athleticism to raise funds for research and spread awareness of scleroderma. Find out how he got ...
[53]
eNews Archives | Scleroderma Research Foundation
The Patient Forum is coming soon! Plus: check out the new CONQUEST video, save the date for CCHC, and get ready for Scleroderma Awareness Month. Read Now.
[54]
Funded Projects - Scleroderma Research Foundation
The Scleroderma Research Foundation assembles a diverse portfolio of projects. These projects span multiple disciplines and facets of scleroderma research.<|separator|>
[55]
[PDF] 2021 Annual Report - Scleroderma Research Foundation
Bob was a passionate champion for scleroderma patients everywhere since 1991 when he first encountered the Scleroderma Research Foundation as an attendee at the.
[56]
SSc-ILD Treatment Info for HCPs - ACTEMRA® (tocilizumab)
ACTEMRA® (tocilizumab), approved for slowing the rate of decline in pulmonary function in adult patients with SSc-ILD. See Full Safety and Boxed Warnings ...
[57]
Scleroderma Research Programs
Led by a Scientific Advisory Board with some of the most highly-regarded scientists in the nation, the Scleroderma Research Foundation's research program ...
[58]
About CONQUEST SSc Therapy Research
CONQUEST is designed to rapidly advance promising treatments for scleroderma and to identify those agents that should progress from phase 2b to phase 3 clinical ...What Is Conquest? · Conquest's Design: How It... · The Srf's Role In Conquest
[59]
The Scleroderma Research Foundation Co-Sponsors Recent NIH ...
May 3, 2024 · The Scleroderma Research Foundation Co-Sponsors Recent NIH Workshop on SSc and cGVHD ... Collaboration is critical to making research progress.
[60]
A Collaborative Project: Genome Research in African ... - YouTube
Sep 11, 2018 · GRASP is a collaborative project between the Scleroderma Research Foundation, the National Human Genome Research Institute at the NIH, ...
[61]
New NIH Strategic Plan Highlights Autoimmunity and Scleroderma |
Jul 30, 2025 · NIH's 2026–2030 plan highlights scleroderma and renews focus on coordinated autoimmune disease research.Missing: priorities | Show results with:priorities
[62]
Dana Delany joins the fight against hard skin illness - CNN.com
In 1999, Delany joined the board of the Scleroderma Research Foundation, a nonprofit corporation in San Francisco, California. When its founder, Delany's friend ...
[63]
dana delany Archives | Scleroderma Research Foundation
dana delany Archives | Scleroderma Research Foundation · 28 Years After the Release of “For Hope” · 26 Years After the Release of “For Hope”.
[64]
The SRF Joins the Rare Disease Diversity Coalition
Apr 1, 2022 · April is an opportunity to raise awareness and encourage advocacy about how health disparities can affect ... The Scleroderma Research Foundation ...Missing: influence | Show results with:influence
[65]
The Scleroderma Research Foundation (SRF) Announces Second ...
Oct 3, 2023 · Finally, with two partners, CONQUEST is fully subscribed and fully funded, ensuring that the platform will be able to execute against the vision ...Missing: allocation percentage<|separator|>
[66]
CONQUER Registry | StopScleroderma.org
Learn about the CONQUER registry, a first-of-its-kind patient registry and biosample repository aimed at improving care and developing more effective, ...