Conference Recap

What an exciting weekend we had in Bellevue, Washington for our National Scleroderma Conference! This conference was truly five years in the making, as this was scheduled to be our destination for the 2020 conference, but COVID had other plans. This year, we had yet another curve ball thanks to the infamous software glitch that affected services across the globe. Our fantastic Foundation staff made a few adjustments, and the conference did not miss a beat.

On Friday, we hosted a Continuing Medical & Nurse Education (CME) program, “The Lung and Scleroderma.” The event allowed healthcare providers in the Pacific Northwest to learn from some of the nation’s leading scleroderma experts. The program was recorded and will be available to providers around the country to complete and earn CME credit. We also hosted a joint meeting with members of the Board of Directors, Patient Advisory Board and Medical and Scientific Advisory Board as conference is the perfect opportunity to for all to gather to review the past year and discuss goals for the next few years.

On Friday evening, we were grateful to recognize our VIP donors with our yearly VIP Reception. This reception is our way of thanking our 1998 Club and Hope Society donors who allow us to further our mission of providing research, education, and support to those living with scleroderma, their caregivers and support network.

The exhibit hall and poster hall were also abuzz with conference attendees, sponsors and speakers. These displays and exhibits allow attendees to learn more about the latest clinical research and the programs and services offered by our Foundation’s supporters.

A special thanks to Dr. Tracy Frech, who provided our opening keynote presentation. Dr. Frech talked about the resiliency of the scleroderma community and the importance of self-care and listening to your body. A key theme of the event was that being healthy is more than just focusing on our physical health.

On Saturday, the Foundation’s annual Volunteer Awards Luncheon celebrated the exceptional contributions of volunteers and chapters across the country. This event always presents an opportunity to share ideas about what is working well in different chapters and to give a special thank you to those who truly put our mission in motion.

Saturday evening kicked off with the Tune In To Lung Health program in partnership with Boehringer Ingelheim designed to raise awareness of ILD and how music and breathing may help people cope with the mental, emotional, and physical disease burden. The session included a conversation with Aly, a scleroderma patient; Dr. Elizabeth Volkmann, a rheumatologist; and Yankees legend Bernie Williams, a former caregiver for his father. The attendees were also treated to a performance by Bernie.?

Sunday arrived with final sessions and the Closing Session with Falguni Desai, Erion Moore, Monica Ramirez, and Evan Rood sharing stories from key moments and experiences in their individual journeys with scleroderma. We officially closed the 2024 conference with participants from our Kids Get Scleroderma, Too! Conference and members of our Heartland Chapter announcing next year’s destination—St. Louis, Missouri!

Our inaugural Pickleball for a Cure tournament was held on Sunday, July 21st, after the National Scleroderma Conference. We had six teams come out to play at the South Bellevue Community Center, with a mix of beginners and seasoned pros. Team Wannabees from the Upper Great Lakes Chapter took home first place! It was a fun-filled afternoon. Stay tuned for tournaments coming to chapters soon.?

To those of you who may not have been able to attend the conference due to travel challenges and other unforeseen circumstances, your presence was missed. We certainly hope you will be able to join us next year in St. Louis for the 2025 National Scleroderma Conference.

While our Conference for the year is now behind us, there is still so much to do this year. If you have not had the opportunity yet, sign up for a Stepping Out to Cure Scleroderma walk. If you're looking to build on the connections you made at Conference, make sure to engage with one of our support groups.

We look forward to continuing our work through the rest of 2024, and before you know it, we'll be getting ready for the 2025 National Scleroderma Conference in St. Louis!