The Scleroderma Research Foundation Monthly eNewsletter | |
Explore Potential Participation in CONQUEST Scleroderma Clinical Trial | |
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Discover two new tools to help you explore involvement in CONQUEST, a clinical trial developed by the Scleroderma Research Foundation (SRF) with input from partner biopharmaceutical companies, to accelerate the development of scleroderma treatment options.
With 90 clinical trial sites open in 20 countries, individuals with interstitial lung disease associated with systemic sclerosis (SSc-ILD) who qualify for the trial can now enroll in sites across the world.
Check out the resources below and learn how you may be able to get involved with CONQUEST:
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Interactive Site Map
The new online map shows all active and planned trial locations, making it easier than ever to find a site near you.
And stay up to date—new trial sites are being added regularly.
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Pre-Screener Survey
Check your potential eligibility with the pre-screener.
To access the pre-screener, visit the CONQUEST website and click "See if I May Qualify" in the top right corner to take the survey.
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Pictured: Dr. Gregory Gordon and Dr. Dinesh Khanna, Co-Chair of the CONQUEST Steering Committee | |
Strengthening Global Collaboration: CONQUEST at EUSTAR 2025 | |
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This month, CONQUEST was proud to sponsor the EUSTAR Course 2025, held February 6-8 in Bordeaux, France. Representing the SRF at this key event was our Chief Medical Officer, Dr. Gregory Gordon, who joined experts in scleroderma research to discuss the latest advancements in the field.
The European Scleroderma Trials and Research Group (EUSTAR) is an international research network consisting of over 200 scleroderma centers. Since its founding in 2004, EUSTAR has played a crucial role in advancing scleroderma research.
"It was an honor to represent the SRF and the CONQUEST clinical study at the EUSTAR Course this year. EUSTAR gathers physicians from the leading research centers in Europe, and their research affects the care of scleroderma patients throughout the world," Dr. Gordon says. "The SRF was excited to be able to take part in the meeting this year."
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February is a powerful month for the scleroderma community as we unite to raise awareness for both Raynaud’s Awareness Month and Rare Disease Day.
In honor of this, members of our community have shared their stories, offering a glimpse into the daily challenges of living with these conditions and the urgent need for continued research toward a cure.
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Anita Shares Her Daughter's Story
In this video, Anita reads a heartfelt letter from her daughter, who was diagnosed with Raynaud's and scleroderma in 2022.
Through her daughter’s own words, Anita sheds light on the challenges and realities of living with these conditions.
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Tomisa's Scleroderma Journey
“My third-grade teacher called my parents after I almost passed out during recess,” Tomisa S. (dx 1993) recalls of her initial experiences with scleroderma.
“Later that day, my mother took me to my pediatrician, and my bloodwork seemed to show there was something wrong.”
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Looking Back: Raising Scleroderma Awareness on National TV for Rare Disease Day | |
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As we approach Rare Disease Day, we’re reflecting on a special moment in our ongoing mission to raise awareness for scleroderma. In 2023, the SRF partnered with Behind the Mystery, a recurring television series dedicated to rare and genetic diseases, to bring national attention to scleroderma and the urgent need for research.
The episode aired as part of The Balancing Act on the Lifetime Network. Through powerful stories of people living with scleroderma and expert insights, it highlighted the challenges of living with scleroderma and the importance of advancing research toward a cure.
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Tomorow is Rare Disease Day—Take Action and Spread Awareness! | |
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February 29 is Rare Disease Day, and today we are shining a light on the entire rare disease community to bring attention to how these diseases affect people and the need for research.
More than 300 million people worldwide live with a rare disease, yet many face significant delays in diagnosis due to a lack of scientific knowledge and quality information. With over 7,000 rare conditions, including scleroderma, the rare disease community is vast—but awareness and research remain critical.
Want to make an impact on Rare Disease Day? You can:
- Share educational resources
- Tell your story on social media
- Host a fundraiser or donate to research
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Get Involved for a Chance to Win an SRF Swag Bag! | |
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This month, we’re excited to celebrate scleroderma advocates with a Swag Bag giveaway—featuring mittens, a tote bag, ear and hand warmers, and more!
To qualify for the giveaway, join us by taking action in your community to raise awareness and/or funds for Raynaud’s Awareness Month and Rare Disease Day.
Once you’ve participated, fill out our giveaway form to tell us about your activity and share any photos you have. Each entry will be included in a random drawing for one of our special swag bags!
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Advocating for the National Institutes of Health and National Science Foundation | |
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An urgent call to action: Today, we invite you to join us in standing strong for the insititutions that make scientific discovery possible. SRF Chairman and scleroderma patient Luke Evnin, PhD, has partnered with Peter Rubin (No Patient Left Behind) and Peter Kolchinsky (RA Capital Management) to champion the critical role of the National Institutes of Health (NIH) and the National Science Foundation (NSF) in driving healthcare forward.
“Whether you consider yourself a patient advocate, investor, innovator, health provider or payer of healthcare services, now is the time to stand up for the vital work of the National Institutes of Health and National Science Foundation... Scientific research thrives on stability, transparency and long-term commitment. The treatments and technologies we take for granted today — vaccines, cancer therapies, genomic medicine — exist because of decades of bipartisan support for peer-reviewed research.”
Read their full letter, which was originally published by BioCentury on February 6, and add your name in support.
| | As the nation’s leading nonprofit investor in scleroderma research, the SRF stands with the broader scientific community in supporting these two vital U.S. institutions. We remain laser-focused on advancing the most promising research to end scleroderma—and we won’t stop until we find a cure. | |
Promising News in ILD Treatment Research | |
Boehringer Ingelheim has announced that its Phase III FIBRONEER-ILD trial examining nerandomilast met its primary endpoint, measuring lung function through forced vital capacity (FVC) at 52 weeks. While nerandomilast remains an investigational treatment for pulmonary fibrosis and has not been approved for use, the results from this trial mark an important achievement in interstitial lung disease (ILD).
“It’s always positive to see advancements in ILD research,” said Greg Gordon, M.D., Chief Medical Officer of the SRF. “This is a great result, and we’re excited to see the future impact for people living with scleroderma.
FIBRONEER-ILD enrolled patients with scleroderma-related ILD (SSc-ILD), including those with significant, existing fibrotic lung disease. However, patients were not allowed to be on immunosuppressive agents, including Cellcept (mycophenolate), which are typically prescribed for SSc patients.
Building on this progress, nerandomilast is also being studied as part of CONQUEST—a global clinical trial launched by the SRF. CONQUEST is currently enrolling its initial cohort of patients with SSc-ILD.
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Meet the Newest Member of the SRF Team: Anoushka! | |
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Please join us in welcoming our new Director of Philanthropy, Anoushka Donnelley! With more than 14 years of experience in fundraising, she has dedicated her career to building donor relationships and advancing meaningful causes.
Anoushka’s journey in philanthropy began unexpectedly as a phonathon caller during college, and she never looked back. Before joining the SRF, she led fundraising efforts at Family House San Francisco, Common Sense Media, Sacred Heart Cathedral Preparatory, and Saint Mary's College.
She looks forward to bringing her expertise to our high-impact, low-headcount team as we work toward a future free of scleroderma. Welcome, Anoushka!
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Scleroderma Research in the News | |
Check out the latest research updates from the wider community from this month. While we didn't fund these projects, we're encouraged to see a continued focus on understanding scleroderma. | |
In Case You Missed it: Recent SRF Highlights | |
Research is at the center of all we do to find a cure. | |
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