The Sjögren’s Foundation's 40th anniversary year has come to a close and we want to thank YOU for making it a celebration!
We have come a long way since 1983; from the exciting new therapies in clinical trials (3 of which are in phase 3!) to the historic renaming of our disease from Sjögren’s syndrome to Sjögren’s DISEASE. We are so proud of where we are and excited for where we are going. We are grateful for all patients, providers, and researchers who have helped us achieve this milestone with such accomplishment!
History
Elaine K. Harris was diagnosed with Sjögren’s in early 1983, and that sparked the beginning of what grew to become today’s Sjögren’s Foundation. She was frustrated by how long it took to identify the symptoms she was experiencing, and once she was diagnosed with Sjögren’s Syndrome by Dr. James “Jim” Sciubba, DMD, PhD, she was determined to seek more information. After diagnosis, she attempted to learn as much as she could about her disease, how to manage it, and what to look out for. She soon became discouraged by the lack of information – she could only find two documents that even mentioned the disease! – and she took it upon herself to take control of her health. Drawing upon her past community involvement, Elaine started a local support group with the only other Sjögren’s patient she had ever met, her doctor’s secretary.
Later, Elaine shared with Dr. Sciubba that she felt it would be beneficial to gather patients to learn more about this disease. Dr. Sciubba and Elaine collaborated to organize a first-of-its-kind meeting about Sjögren’s. They rounded up Sjögren’s patients from Dr. Sciubba’s practice and other physicians, including Robert “Bob” Greenwald, MD, Steve Carsons, MD, and Ira Udell, MD. Initially determined to simply meet and educate other patients, she ended up achieving so much more by growing that support group into what today is the Sjögren’s Foundation.
That first support group meeting was held in September 1983 and six months later, the first issue of The Moisture Seekers newsletter, which has now evolved into Conquering Sjögren’s, was published. In the summer of 1985, the Foundation was incorporated. The first Board of Directors was then established with Elaine Harris becoming the first president of the Sjögren’s Syndrome Foundation. In 2020, the Foundation changed its name from the Sjögren’s Syndrome Foundation to the Sjögren’s Foundation and dropped the use of “primary”, “secondary”, and syndrome in all materials to reflect that Sjögren’s is a serious, systemic, and prevalent disease.
Our 40th Year
The Sjögren’s Foundation knew how important it was to celebrate this milestone. We began our celebration in September 2023, and we are just now closing the celebration in October 2024. Throughout the year, we used a special 40th anniversary logo and incorporated it into our conferences, Walk for Sjögren’s events, and awareness programs. We had over 1700 conference registrants (Fall Focus and National Patient Conference) who helped celebrate the 40th anniversary, and over 200 patient story submissions that we shared during Sjögren’s Awareness month and throughout the year. We demonstrated how we are Conquering Sjögren’s – One Step at a Time with our Walk for Sjögren’s program and raised over $250,000! During our World Sjögren’s Day celebration, our sponsor, Amgen, offered to match up to $40,000 in honor of our 40th anniversary, where YOU helped us raise over $80,000 that will be used to continue funding Foundation initiatives.
While we were celebrating, we continued to build on our momentum. Our commitment to our patients means that we will never stop working on our mission to:
- Support and Educate patients and their loved ones;
- Educate and provide credible resources for healthcare providers;
- Be the voice of all patients through advocacy efforts;
- Encourage and Fund innovative research to learn more about Sjögren’s and how to better diagnose, manage, treat, and ultimately cure this disease.
Advocacy and Support for Patients with Sjögren’s
What a better year than our 40th to accomplish the goal of our Nomenclature initiative and have the international community accept Sjögren’s disease as the official name of the disease and discarding the term “secondary Sjögren’s,” as it connoted that Sjögren’s was “less than” the other disease(s). This change is already taking place around the globe, including within government agencies.
Earlier this year, we submitted our second nomination to the Centers for Medicare and Medicaid, alongside other organizations in the Autoimmune Working Group and Oral Health Consortium, to argue that certain dental services are inextricably linked to immunosuppressive therapies for individuals with autoimmune disorders. Despite two years of fighting for Sjögren’s and autoimmune disease patients to obtain access to dental coverage, CMS did not move forward with our nomination. The Sjögren’s Foundation will develop a strategy to answer the CMS ruling and will keep moving forward with this initiative.
Congressman Morelle honored all Sjögren’s patients when he agreed to support and present our new Resolution on the House floor to coincide with our 40th anniversary celebration. For Sjögren’s Awareness month. April 20204, our new Resolution was presented and recorded as official document H.Res.1094. This Resolution is now the official document that states our new disease name, the seriousness of the disease including the range of experienced symptoms, and the need for more research funding. The Foundation is committed to advocating for Sjögren’s patients and unlocking government funding to learn more about this disease, the people that are affected, and better ways to diagnose and treat the disease.
Funding Innovative Research in Sjögren’s
Our Sjögren’s Foundation Research Grants Program was revamped in 2023 to provide more opportunities and funding for Sjögren’s research beginning in 2024. We increased grant money given to our Pilot and High Impact Grants and created two new funding mechanisms. The new Dynamic Grant offers support to time-sensitive and critical work that falls outside of the normal grant cycle for the Foundation’s annual grants. The Partner Grant was created to facilitate collaborations between the Foundation and another funding organization. This, in turn, will provide more funds for the researcher and it is our hope that it will attract new researchers into the field of Sjögren’s. This year we increased funding in support of Foundation research grants provided to clinical and scientific researchers and awarded $275,000 in new research grants— a $150,000 increase from last year! In the past three years, the Foundation has funded $1.8 million in research projects.
We also had our busiest year working with pharmaceutical companies that are bringing new Sjögren’s-specific therapies to clinical trial and hopefully, to market. We are optimistic that at least one of these therapies will be on the market within the next few years!
Educating Patients and Healthcare Providers about Sjögren’s
This year, we also rolled out our new and upgraded conference platform for the National Patient Conference and will continue for Fall Focus to provide a better overall experience and more opportunities to interact with experts and other patients.
Our State of Sjögren’s professional conference for healthcare provider and researchers continues to provide medical education to all specialties and this year we were able to offer continuing medical education credits to bring in more professionals than ever before. The Foundation has also collaborated with medical education leaders, such as Prime, PriMed, and National Jewish Health, to educate nearly 12,000 healthcare providers across multiple specialties since 2022. We are proud to be “the credible resource” for not only patients, but also healthcare professionals as we work to improve the quality of care received by all patients with Sjögren’s.
The Foundation also worked tirelessly to complete the Clinical Practice Guidelines for the Peripheral Nervous System with the aim to bridge the gap between rheumatologists and neurologists and help provide patients with Sjögren’s who have PNS symptoms the care they need. We have submitted our publication to a peer-reviewed journal and are awaiting comment. Once we are published in a journal, we are then able to produce the handout to distribute to patients and providers! As soon as our publication is approved, we will make an announcement and place the guidelines on our website.
Our 40th anniversary has been a busy and productive year, and we couldn’t be more excited to continue this momentum into the future.
The Sjögren’s Foundation's 40th anniversary year has come to a close and we want to thank YOU for making it a celebration!
We have come a long way since 1983; from the exciting new therapies in clinical trials (3 of which are in phase 3!) to the historic renaming of our disease from Sjögren’s syndrome to Sjögren’s DISEASE. We are so proud of where we are and excited for where we are going. We are grateful for all patients, providers, and researchers who have helped us achieve this milestone with such accomplishment!
History
Elaine K. Harris was diagnosed with Sjögren’s in early 1983, and that sparked the beginning of what grew to become today’s Sjögren’s Foundation. She was frustrated by how long it took to identify the symptoms she was experiencing, and once she was diagnosed with Sjögren’s Syndrome by Dr. James “Jim” Sciubba, DMD, PhD, she was determined to seek more information. After diagnosis, she attempted to learn as much as she could about her disease, how to manage it, and what to look out for. She soon became discouraged by the lack of information – she could only find two documents that even mentioned the disease! – and she took it upon herself to take control of her health. Drawing upon her past community involvement, Elaine started a local support group with the only other Sjögren’s patient she had ever met, her doctor’s secretary.
Later, Elaine shared with Dr. Sciubba that she felt it would be beneficial to gather patients to learn more about this disease. Dr. Sciubba and Elaine collaborated to organize a first-of-its-kind meeting about Sjögren’s. They rounded up Sjögren’s patients from Dr. Sciubba’s practice and other physicians, including Robert “Bob” Greenwald, MD, Steve Carsons, MD, and Ira Udell, MD. Initially determined to simply meet and educate other patients, she ended up achieving so much more by growing that support group into what today is the Sjögren’s Foundation.
That first support group meeting was held in September 1983 and six months later, the first issue of The Moisture Seekers newsletter, which has now evolved into Conquering Sjögren’s, was published. In the summer of 1985, the Foundation was incorporated. The first Board of Directors was then established with Elaine Harris becoming the first president of the Sjögren’s Syndrome Foundation. In 2020, the Foundation changed its name from the Sjögren’s Syndrome Foundation to the Sjögren’s Foundation and dropped the use of “primary”, “secondary”, and syndrome in all materials to reflect that Sjögren’s is a serious, systemic, and prevalent disease.
Our 40th Year
The Sjögren’s Foundation knew how important it was to celebrate this milestone. We began our celebration in September 2023, and we are just now closing the celebration in October 2024. Throughout the year, we used a special 40th anniversary logo and incorporated it into our conferences, Walk for Sjögren’s events, and awareness programs. We had over 1700 conference registrants (Fall Focus and National Patient Conference) who helped celebrate the 40th anniversary, and over 200 patient story submissions that we shared during Sjögren’s Awareness month and throughout the year. We demonstrated how we are Conquering Sjögren’s – One Step at a Time with our Walk for Sjögren’s program and raised over $250,000! During our World Sjögren’s Day celebration, our sponsor, Amgen, offered to match up to $40,000 in honor of our 40th anniversary, where YOU helped us raise over $80,000 that will be used to continue funding Foundation initiatives.
While we were celebrating, we continued to build on our momentum. Our commitment to our patients means that we will never stop working on our mission to:
Advocacy and Support for Patients with Sjögren’s
What a better year than our 40th to accomplish the goal of our Nomenclature initiative and have the international community accept Sjögren’s disease as the official name of the disease and discarding the term “secondary Sjögren’s,” as it connoted that Sjögren’s was “less than” the other disease(s). This change is already taking place around the globe, including within government agencies.
Earlier this year, we submitted our second nomination to the Centers for Medicare and Medicaid, alongside other organizations in the Autoimmune Working Group and Oral Health Consortium, to argue that certain dental services are inextricably linked to immunosuppressive therapies for individuals with autoimmune disorders. Despite two years of fighting for Sjögren’s and autoimmune disease patients to obtain access to dental coverage, CMS did not move forward with our nomination. The Sjögren’s Foundation will develop a strategy to answer the CMS ruling and will keep moving forward with this initiative.
Congressman Morelle honored all Sjögren’s patients when he agreed to support and present our new Resolution on the House floor to coincide with our 40th anniversary celebration. For Sjögren’s Awareness month. April 20204, our new Resolution was presented and recorded as official document H.Res.1094. This Resolution is now the official document that states our new disease name, the seriousness of the disease including the range of experienced symptoms, and the need for more research funding. The Foundation is committed to advocating for Sjögren’s patients and unlocking government funding to learn more about this disease, the people that are affected, and better ways to diagnose and treat the disease.
Funding Innovative Research in Sjögren’s
Our Sjögren’s Foundation Research Grants Program was revamped in 2023 to provide more opportunities and funding for Sjögren’s research beginning in 2024. We increased grant money given to our Pilot and High Impact Grants and created two new funding mechanisms. The new Dynamic Grant offers support to time-sensitive and critical work that falls outside of the normal grant cycle for the Foundation’s annual grants. The Partner Grant was created to facilitate collaborations between the Foundation and another funding organization. This, in turn, will provide more funds for the researcher and it is our hope that it will attract new researchers into the field of Sjögren’s. This year we increased funding in support of Foundation research grants provided to clinical and scientific researchers and awarded $275,000 in new research grants— a $150,000 increase from last year! In the past three years, the Foundation has funded $1.8 million in research projects.
We also had our busiest year working with pharmaceutical companies that are bringing new Sjögren’s-specific therapies to clinical trial and hopefully, to market. We are optimistic that at least one of these therapies will be on the market within the next few years!
Educating Patients and Healthcare Providers about Sjögren’s
This year, we also rolled out our new and upgraded conference platform for the National Patient Conference and will continue for Fall Focus to provide a better overall experience and more opportunities to interact with experts and other patients.
Our State of Sjögren’s professional conference for healthcare provider and researchers continues to provide medical education to all specialties and this year we were able to offer continuing medical education credits to bring in more professionals than ever before. The Foundation has also collaborated with medical education leaders, such as Prime, PriMed, and National Jewish Health, to educate nearly 12,000 healthcare providers across multiple specialties since 2022. We are proud to be “the credible resource” for not only patients, but also healthcare professionals as we work to improve the quality of care received by all patients with Sjögren’s.
The Foundation also worked tirelessly to complete the Clinical Practice Guidelines for the Peripheral Nervous System with the aim to bridge the gap between rheumatologists and neurologists and help provide patients with Sjögren’s who have PNS symptoms the care they need. We have submitted our publication to a peer-reviewed journal and are awaiting comment. Once we are published in a journal, we are then able to produce the handout to distribute to patients and providers! As soon as our publication is approved, we will make an announcement and place the guidelines on our website.
Our 40th anniversary has been a busy and productive year, and we couldn’t be more excited to continue this momentum into the future.