By Mary Wheatley, CEO
The National Scleroderma Foundation team just returned from ACR Convergence (ACR stands for American College of Rheumatology), the largest gathering of scleroderma specialists in the world, and here’s what we learned.
While the hybrid format made for an interesting experience (we still have catching up to do!), there was no question the science was incredible, and scleroderma was well-represented. There were 23 sessions focused on scleroderma, and 62 virtual poster presentations. The Scleroderma Community Hub hosted three sessions and drew more than 350 people interested in the disease. In addition to these sessions specifically focused on scleroderma, there were numerous others focused on patient engagement in research, precision medicine, and related conditions such as Raynaud’s.
Patient advocacy and engagement was a theme throughout the meeting, and one of our community members, Amy Gietzen, had a poster accepted for the Patient Perspective Poster session. Another of our members, Jessica Massengale (winner of this year’s Messenger of Hope award), attended the meeting as well.
We were grateful for the opportunity to connect with leaders in the field, and within our organization, such as Dr. Janet Poole, who was recognized as a Master of the College. Dr. Poole is an ARP Past President, and serves as Professor, Division Chief, and Director of the Occupational Therapy Graduate Program, Department of Pediatrics, School of Medicine, University of New Mexico. We are also fortunate to have her expertise on the National Scleroderma Foundation Medical and Scientific Advisory Board.
Other highlights from the meeting include:
- Drs. Elana Bernstein and Zsusanna McMahan presented on extrapulmonary manifestations of systemic sclerosis, focusing on the heart and esophagus;
- Dr. Fred Wigley was this year’s honoree for the Philip S. Hench, MD Memorial Lecture and discussed moving to precision management of the disease;
- Dr. Francesco Boin and others gave a fascinating look on scleroderma mimics, that is diseases that present as scleroderma, to help providers make the correct diagnosis; and
- Sunday’s plenary included a talk by Dr. Dillon Popovich on using 3D skin models to identify anti-fibrotic targets in scleroderma.
Our corporate supporters were also there in force, sharing the latest science from their studies, as well as information on medicines approved for the treatment of scleroderma-related illnesses.
We were also able to connect with our colleagues in the nonprofit funding space and discuss ways to collaborate and advance the work we do in meaningful ways.
It was wonderful to connect with friends and colleagues, old and new. And it definitely made us look forward to our National Scleroderma Conference next summer. There truly is no substitute for being together in person.
There was so much to see and learn, and we’re still absorbing it all, and have plenty of posters to go back and watch. Sessions are available on-demand to registered participants through October 2023, and you can purchase an on-demand pass for access now, too.