MyoCon! Rate increases on August 28th!
By Julia Nickerson
On June 1, I had the privilege of helping launch an exciting chapter of the Visiting Professor Program at the University of California, San Francisco (UCSF). As I reflect on the day, I am incredibly proud of what we accomplished together and grateful to the many partners who made it possible.
The Visiting Professor Program is a partnership between Nori’s Fight and The Myositis Association (TMA). It was created to bring experts and clinicians together across specialties to improve awareness about myositis and interstitial lung disease (ILD), inspire collaboration across medical disciplines, and ultimately improve patient care. This inaugural California program achieved exactly that goal.
A key highlight of the event was the participation of Sonye Danoff, MD, PhD, a pulmonologist and ILD specialist at Johns Hopkins University. Dr. Danoff delivered two outstanding presentations focused on MDA-5-associated rapidly progressive interstitial lung disease (RP-ILD), sharing both her clinical expertise and practical insights. The sessions brought together pulmonologists, rheumatologists, and dermatologists—specialists who often care for the same patients but may not always have the opportunity to learn alongside one another.
Including multiple specialties in the discussion proved to be incredibly valuable. Throughout the presentations, pulmonologists asked thoughtful questions about everything from recognizing skin manifestations of disease to referral pathways and opportunities for collaboration earlier in the patient’s disease course.
One of the most encouraging moments came when Charlotte Hurabielle, MD, a rheumatologist at UCSF, shared that she was finally able to put faces to many of the names she had previously known only through referrals and email correspondence. Creating those personal connections was one of our primary goals, and it was rewarding to see those relationships begin to develop in real time.
Approximately 15 to 20 physicians attended each of the two open sessions in person, with additional participants joining virtually. While it was difficult to measure exactly how many attended remotely, the level of engagement throughout the day was remarkable. The conversations were thoughtful, collaborative, and focused on how specialists can work together more effectively to improve outcomes for patients facing complex autoimmune lung diseases.
The collaboration extended beyond the formal presentations. The multidisciplinary discussions continued during a Women in Pulmonary luncheon, where clinicians had additional opportunities to exchange ideas and ask questions in a more informal setting. According to Dr. Danoff, these conversations further strengthened connections between the pulmonary, dermatology, and rheumatology teams.
Reflecting on the day, Dr. Danoff says,“The session at UCSF with dermatology and rheumatology was a great learning opportunity for everyone (me included). The connections between the pulmonary group and the dermatology and rheumatology providers were further solidified during the Women’s lunch. There is such a lot that we can learn from each other given the opportunity for face-to-face discussion.”
One of the most exciting outcomes from the visit was the opportunity for Dr. Danoff to meet individually with members of the pulmonary faculty, including specialists in ILD and lung transplantation. Those conversations revealed a shared commitment to advancing care for patients with MDA-5 disease and highlighted opportunities for future collaboration.
“We found a lot of common ground to discuss in terms of how best to approach the care of MDA-5 patients in the inpatient, ICU, and outpatient setting,” Dr. Danoff says. I am hopeful that these connections will lead to a multi-institutional registry to capture the clinical care and outcomes of patients with MDA-5 RP-ILD with the goal of identifying best practices.”
For me, that statement captures the true value of the Visiting Professor Program. While education is an important component, the larger goal is to create lasting relationships that lead to meaningful advances in care, research, and clinical practice. When experts from different institutions and specialties come together, new ideas emerge and opportunities for collaboration grow.
“I am deeply grateful to both Nori’s Fight and TMA for supporting this visiting professorship,” Dr. Danoff says. “Without their organization, engagement, and energy, this opportunity would not have been possible.” She added that she hopes the visit raised awareness of MDA-5 RP-ILD, helped educate colleagues about its often-subtle presentation, and provided an opportunity to discuss practical approaches to treatment.
The day was a powerful reminder of what can happen when passionate people unite around a shared mission. By fostering dialogue across institutions and specialties, the Visiting Professor Program is helping build the foundation for better care, stronger research collaborations, and brighter futures for patients and families affected by these rare diseases. I am honored to have been part of this first program and excited to see where these new connections lead.
Julia Nickerson is President and Co-founder of Nori’s Fight (founded in 2024), a nonprofit focused on myositis awareness, education, and research, particularly anti-MDA5 dermatomyositis and related interstitial lung disease.
