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By Janet E. Church, President & CEO, Sjögren's Foundation

Hello Sjögren’s patients, loved ones, clinicians, and researchers! Another year has flown by and as I reflect on the accomplishments made in 2023, I am excited to keep the momentum moving forward in 2024. I am proud of what the Sjögren’s Foundation has achieved for patients with increased support, education, and advocacy and thrilled with the advancements we see in research and clinical trials. It has been a year filled with orchestrating relationships and priorities and guiding incredible work with our volunteers, Board of Directors, researchers, and Pharma. Let's take a look at our accomplishments!

This year, we focused on expanding provider education across certain specialties to highlight the need for multidisciplinary care. Whenever we speak to providers, we leverage the Living with Sjögren's  survey data to drive home that Sjögren’s is serious, systemic, and prevalent. We not only use the entire summary, but we also take each specialty and present the survey data pertinent to that field to highlight the specific Sjögren’s symptom presentation in a clinician’s specialty.

We started the year with our annual professionals-only conference— State of Sjögren’s. This year’s focus was on neurological manifestations in Sjögren’s, and we had over 400 clinicians attending. The Foundation also attended and/or presented posters at several conferences aimed at different professional audiences and specialty areas including the American College of Rheumatology Annual Meeting with over 7,000 rheumatologists in attendance and the American Autonomic Society Conference, which included clinicians and researchers who engage with the autonomic nervous system.

The Foundation has strategically expanded our presence and attended four new conferences in support of our multi-specialty education efforts, including: the American Academy of Neurology’s (AAN) Annual Meeting; the American Thoracic Society’s (ATS) International Conference in Washington, where we highlighted our Pulmonary Clinical Practice Guidelines; the American Association of Nurse Practitioners (AANP) National Conference; the Rheumatology Nurses Society Annual Meeting; and the Rheumatology Advanced Practice Provider (RhAPP) Conference.

Our attendance and content presentations were very well received at all events, and we look forward to these audiences attending our upcoming State of Sjögren’s this January, which will focus on the difficult-to-diagnose patient (such as anti-SSA/Ro negative patients). This year’s event will offer continuing medical education (CME) credits for nurses and physicians. State of Sjögren’s will be recorded and we will offer online CMEs to professionals on our Sjögren’s Training and Education Platform (STEP) for professionals.  In addition to in-person education, we have three online CME courses running currently. These courses are produced by PriMed, Prime Inc. , and a newly launched program from National Jewish Health with a focus on pulmonary issues.

We also expanded our research program by adding new grant mechanisms. This past spring, we awarded the Foundation grants, which included our first Dynamic grant presented to Oklahoma Medical Research Foundation (OMRF) to advance their genetic research on Sjögren’s. We also saw advancement by our Sjögren's Team for Accelerating Medicines Partnership (STAMP) for the FNIH/NIH AMP® AIM project!

This year, we leaned into advocacy efforts by submitting a proposal to the Centers for Medicare and Medicaid to include coverage  for medically necessary dental care and advocacy efforts with Congress, including presenting a new Resolution that updates the government on the facts about Sjögren’s and Sjögren’s Patients. Our 2024 advocacy efforts will continue pushing these projects forward!

April was an exciting month as it is Sjögren's Awareness Month. In addition to our successful National Patient Conference with 1,400 attendees, we launched a new Patient-to-Patient program. This program encourages patients to submit their personal stories to us and we present them on our website  and social media. The presentation of stories clearly demonstrates that Sjögren’s can affect anyone and that it impacts people differently. I encourage you to submit your story! We closed out April by ringing the NASDAQ bell  and presenting Sjögren’s to millions of people around the world!

This past year has also seen a significant increase in clinical trials coming to market. Last year we saw three clinical trials for systemic Sjögren’s complete their phase 1 and phase 2 trials, and we have two phase 3 trials in process with more preparing to launch. I encourage you to keep an eye on our Clinical Trials page  to see if a trial is enrolling in your area. Hope for better treatment is around the corner!

Our Support Group program has also expanded, and we now provide more support groups across the country. Supporting patients is integral to the Foundation and in fact, it is why the Foundation was created! Forty years ago in September 1983, Elaine K. Harris along with her doctor- James “Jim” Sciubba, DMD, PhD- held the first support group to help patients better understand their disease and how to manage it. Forty years is an amazing milestone, and we will be celebrating  it throughout the year!

As we welcome in the holiday season, we say goodbye to 2023, and I want to thank the Foundation staff for their commitment to patients, our volunteers who bring Sjögren’s education and support to local communities, our Board of Directors who give their time to ensure our mission is moving forward, our clinicians and researchers who have dedicated their lives to Sjögren's, and our donors who are committed to helping us achieve all our goals. And I especially want to thank you! I am grateful for your support, and I am honored to lead this organization as we fight together to conquer the complexities of Sjögren’s.

Wishing you a happy and healthy holiday season!


Janet E. Church