As the only national patient advocacy organization in the US, the National Scleroderma Foundation is honored to represent more than 300,000 Americans living with scleroderma. During our time at ACR Convergence in Chicago, we connected with supporters from our medical and scientific community, advocates and champions living with scleroderma, as well as our corporate and nonprofit partners. The excitement among all members of our scleroderma community was palpable.
We are grateful to our friends and partners Adicet Bio, argenx, AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, Merck, Novartis, Johnson & Johnson for their steadfast commitment to our community. The path ahead is so much brighter thanks to your dedication, collaboration and partnership. Thank you.
Thanks also to our friends American College of Rheumatology, Arthritis Foundation, Childhood Arthritis and Rheumatology Research Association, Lupus and Allied Diseases Association, Lupus Foundation of America, Foundation for Sarcoidosis Research, Foundation for the National Institutes of Health, The Myositis Association, Rheumatology Research Foundation, Sjögren’s Foundation, Rheumatology Research Foundation, and Vasculitis Foundation for your shared commitment and vision. We are so grateful for the opportunity to work with you!
The conference kicked off with the Opening Session on Saturday afternoon, where Dr. Maureen Mayes was awarded the Distinguished Clinical Investigator Award, which recognizes leaders who have made outstanding contributions to the field of rheumatology.
More than 10,000 attendees gathered for hundreds of sessions over six days in Chicago. I am DELIGHTED to share there were more than 200 sessions focused on scleroderma at this year’s conference. This, compared to just over 30 last year. From a 900% (!) increase in scleroderma clinical trials in the last five years alone, to this incredible increase in content at the world’s premiere rheumatology meeting, we have more cause for hope than ever before. Topics included Interstitial Lung Disease, Raynaud’s Phenomenon, vasculopathy and Gastrointestinal involvement. CAR-T therapy was a hot topic again this year, with several sessions highlighting this novel approach to treating complex diseases including scleroderma.
Here are a few highlights:
- Janet Poole shared findings from her Foundation funded project the Making it WorkTM Systemic Sclerosis Program
- We launched our lung screening pocket guide on site, which was created in partnership with PHA and RhAPP. You can download the guide for FREE here.
- Shiloh Kantz shared the challenges involved for parents championing change for their children living with juvenile scleroderma
- Ivan Foeldvari shared expert medical and surgical approaches to difficult cases in juvenile localized scleroderma
- DeAnna Baker Frost presented challenges and solutions for management of Raynaud’s Phenomenon
- Cristina Padilla discussed the importance of oral health in scleroderma
- Elizabet Volkmann shared data on the Microbiome and GI Symptoms in Systemic Sclerosis from an International, Multi-center, Observational Study
- Afton Hassett shared a framework for Co-creating Health Interventions Through Collaborative Research and Community Empowerment
- Yen Chen shared data on cognitive dysfunction in scleroderma, with Sheri Hicks sharing her experience with brain fog
- In her Patient Perspectives session, Mary Alore shared her experience dealing with feelings of isolation and finding community and connection
This work builds on decades of work, including landmark studies from a dedicated community who continue to work tirelessly to advance our understanding of disease pathogenesis, organ-specific complications, and novel therapeutic pathways.
One of our patient champions shared with me yesterday, “It feels like our time has finally come!” I couldn’t agree more. This year marks a significant turning point in our journey to find a cure.
While we are coming away from Convergence energized and hopeful, further research is critical to continue to enhance our understanding as a community, increase support for those diagnosed, and lead to new and innovative therapies that will transform the lives of those living with scleroderma. You can support groundbreaking scleroderma research now by giving at http://scleroderma.org/donate.
Mary J. Wheatley, IOM, CAE
Chief Executive Officer