2019 Highlights From the Sjögren’s Foundation
2019 was an exciting year for the Sjögren's Foundation and we want to share with you the impact being made in the fight against Sjögren’s. However, the greatest impact is being made by YOU.
It is your generosity and support that has made this past year's achievements possible. Below are some examples of how your donations have made a difference in conquering the complexities of Sjögren’s.
Serving as the Voice of All Sjögren’s Patients
During the past year, Foundation staff attended, participated, and presented at numerous meetings and events to help maximize our reach and guarantee that the Sjögren’s community’s voice is heard. One of our top priorities is ensuring that the patient voice is part of every discussion around clinical trials, research initiatives, legislation, and the decisions of government agencies. Just this past year we attended meetings and events held by the National Institutes of Health, the U.S. Food & Drug Administration (FDA), the American College of Rheumatology (ACR), the National Health Council, the American Association for Dental Research, and more. International meetings and research collaborations included the European Congress of Rheumatology (EULAR), Sjögren Europe, the NECESSITY project, HarmonicSS, and the International Association for Dental Research.
Closer to Finding New Treatments for Sjögren's
The Foundation's Clinical Trials Consortium, an international initiative to increase the availability and accessibility of therapies to treat Sjögren’s, continues to expand its efforts. Recent meetings were held to further evaluate key issues surrounding clinical trials while focusing on the development of better outcome measures in Sjögren’s and the discovery of diagnostic and prognostic biomarkers. Additionally, in 2019, the Foundation designed and launched the Sjögren’s Training and Education Platform (STEP), the first ever online resource to be used to train clinical trial investigators. There are more than ten pharmaceutical companies working on developing potential therapies for Sjögren’s and the Foundation is engaged with these companies as well as the FDA to ensure that therapies are developed to meet the needs and wants of Sjögren’s patients.
Furthering Sjögren’s Clinical Practice Guidelines
CPGs phase 1Phase 2 of the Foundation's Clinical Practice Guidelines (CPGs) is well underway and will expand the number of topic areas covered. Included in Phase 2 are guidelines for pulmonary complications, central nervous system involvement, peripheral nervous system involvement, lymphoma and vasculitis. These will significantly increase the guidance offered on the management and treatment of Sjögren’s. It will also expand the breadth and number of specialists who have not traditionally trained and/or been involved with the of treatment of Sjögren’s. The Foundation is working with nearly 100 healthcare providers recruited to assist with the development of Phase 2.
New Research Grantees Under Revamped Program
The Foundation was excited to announce the 2019-2020 research grant recipients - the first under the newly revamped Research Grant Program. This new program offers two distinct grant types, the High Impact Research Grant at $75,000 and the Pilot Research Grant at $25,000. The research review committee also renewed three research grants from the 2018-2019 awardees.
The Foundation uses a rigorous review process that chooses our awardees by determining which projects will have the greatest potential impact on the lives of those living with Sjögren’s while placing a high priority on both clinical and scientific research into the cause, prevention, detection, and treatment of Sjögren’s. The Foundation is excited that this past year we saw a substantial increase in the number of applications received.
Providing Patient Support & Sjögren's Education
- In April, over 550 people attended the Foundation's National Patient Conference (NPC) near Boston, MA. This was the largest attendee turnout ever for an NPC. Another 175 people recently attended a one-day patient conference in Cleveland, OH.
- The Foundation continues to support 65 local support groups and Awareness Ambassadors throughout the U.S.
- The Foundation also continues to develop a patient newsletter with up-to-date information while addressing pressing topics and patient tips.
- In 2019, the Foundation created and launched a new web series on YouTube called Exploring Sjögren’s which explores the disease and the lives of patients living with Sjögren’s and how they cope.
- Additionally, the Foundation website, www.sjogrens.org, remains a top source for Sjögren’s information for patients, their families, and healthcare providers.
Providing Credible Resources & Education for Healthcare Professionals
- The Foundation led a successful effort to revise the U.S. ICD-10 code (International Statistical Classification of Diseases and Related Health Problems, 10th revision) for Sjögren's - a major victory for Sjögren's.
- The Foundation attended the ACR Annual Meeting where it hosted a Study Group on Global Updates in Sjögren's and participated in multiple poster and abstract sessions.
- The Foundation recently attended the Pri-Med Conference for primary care physicians where it presented a continuing medical education session on Sjögren's to more than 800 doctors.
- The Foundation continues to produce Sjögren's Quarterly, a complimentary publication distributed 4x a year to all healthcare professionals and researchers interested in Sjögren's.
Once again, on behalf of the Sjögren's Foundation, thank you for helping to make these 2019 successes and accomplishments possible! Your support and generosity has helped the Foundation continue our fight to conquer the complexities of Sjögren's. If you would like to learn more or have any questions about our programs and initiatives, please do not hesitate to contact the Foundation. We are truly grateful for your help and look forward to achieving even greater success in 2020!
All my best,
Chief Executive Officer
We encourage you to share this with family and friends so they too have the opportunity to see the work and impact the Foundation is having in the fight against Sjögren’s.