Our Impact
Every step we take brings us closer to awareness, better treatments, and hope for those affected by MyosAnti-MDA5 Dermatomyositis.
Supporting research improvements
Nori’s Fight made a $10,000 grant to support The Myositis Clinical Trial Consortium (MCTC) in obtaining their 501(c)(3) status so they can make a real impact.
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The Myositis Clinical Trial Consortium (MCTC) is revolutionizing research and care for myositis patients worldwide. By uniting top clinical investigators, researcher professionals, patient advocates, MCTC will drive groundbreaking advancements in facilitating, promoting, coordinating, and conducting clinical trials to transform the lives of those impacted by Myositis.
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MCTC has 10 priority projects planned for 2025, along with a dedicated working group focused on Idiopathic Inflammatory Myopathy-associated Interstitial Lung Disease. This initiative is especially meaningful to us at Nori’s Fight, and we’re proud to support MCTC in this important work.
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Partnering with UCSF to bring education and treatment to San Francisco
Building the framework for a Myositis Center​
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Nori’s Fight provided a $30,000 grant to the University of California, San Francisco (UCSF) to lay the foundation for a dedicated Myositis clinic.
This partnership represents a critical step toward improving care, advancing research, and providing specialized resources for patients affected by this rare and often misunderstood disease. By working alongside leading experts, we are committed to developing a center of excellence that will drive innovation in diagnosis, treatment, and long-term patient support.
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We have 3 amazing physicians that are supporting this initiative.
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​Maria Dall'Era, MD
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Dr. Dall’Era is the Jean S. Engleman Distinguished Professor of Medicine and Chief of the Division of Rheumatology at the University of California, San Francisco (UCSF). She is also the Director of the UCSF Rheumatology Clinical Research Center and Lupus Clinic. Dr. Dall'Era has been a dedicated advocate from the start, committed to advancing our shared mission of a dedicated Myositis Center.
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Andrew Gross, MD
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​Dr. Gross, a rheumatologist, is co-director of the UCSF Scleroderma Center and medical director of rheumatology at UCSF. His expertise in building the Scleroderma Center will be instrumental in launching the Myositis Center, along with his collaborative approach across specialties like pulmonology—essential for addressing the complexity of Myositis.
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Charlotte Hurabielle, MD
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Dr. Hurabielle is double-boarded in Immunology and Dermatology, which brings a rare and critical perspective that will be vital to diagnosing and managing the complex skin and immune system involvement in Myositis patients. She is also the recipient of the Irene Perstein award, which is granted annually by the UCSF School of Medicine to an outstanding, newly recruited, faculty scientist.
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Together, we are building a future where those affected by Myositis receive the comprehensive care they deserve.
Planning our first Visiting Professor Program
Nori’s Fight is partnering with UCSF and TMA to host a Visiting Professor event in 2026, bringing Dr. Sonye Danoff, Pulmonologist and Associate Director of the Johns Hopkins Myositis Center to UCSF to share vital information about Myositis related Interstitial Lung Disease.
This gathering will be a pivotal opportunity to develop educational programs that enhance physician training, improve patient care, and advance research in Myositis. By connecting leading specialists, we aim to foster collaboration and lay the groundwork for a stronger, more informed medical community dedicated to this rare disease.
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Learn more about our Visiting Professor Program and let us know if you are interested in participating or supporting!
Myositis Awareness Month
Raising Awareness Around Auto-immune Interstitial Lung Disease
We were honored to collaborate with The Myositis Association for a special webinar "When Myositis Meets the Lungs".
Our President, Julia Nickerson shared Nori's story before Dr. Julius Birnbaum (UPMC) and Dr. Sonye Danoff (Johns Hopkins) shared information about autoimmune interstitial lung disease (ILD)—a serious complication of myositis.
We Care for Rare Summit 2025
In response to the FDA and NIH postponing their Rare Disease conference in Feb, we partnered with The Myositis Association and MIHRA, to host the the We Care for Rare Summit—a virtual forum dedicated to sharing patient stories and research breakthroughs. This event brought together experts, advocates, and those affected by rare diseases to drive awareness and collaboration.
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Within a week we had over 400 registrants and over 250 attendees from 12 countries. What a huge accomplishment!
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Our President and Co-Found Julia Nickerson, shared Nori's story and our friend Lindsay Guentzel shared her personal journey and insights, highlighting the importance of patient advocacy and research in the rare disease community as the keynote speaker.
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If you missed it, check it out below!
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