Sjögren's Foundation 2020 Impact
This past year has been an unprecedented time in the world as well yet we are proud of how the Sjögren’s Foundation has been able to maintain our momentum. We are grateful to have been able to continue providing valuable and needed support to all Sjögren’s patients. And most importantly, the Foundation has strived to ensure every patient knew they were not alone and that we are here for them during these trying times.
The Foundation is extremely thankful for every volunteer, healthcare professional, and donor, whose support has allowed us to effectively respond to the COVID-19 crisis, while at the same time, not let it impact our valuable work and efforts.
At the start of the pandemic, the Foundation took immediate action to ensure patients were safe and had the support and guidance they needed. We shared valuable information such as precautions Sjögren’s patients should take as well as regular updates on the Foundation’s ongoing response to COVID-19. We also developed a frequently asked questions page on our website to provide a little more understanding and information about Sjögren’s and COVID-19 which frequently had answers added to it as new questions arose.
When the hydroxychloroquine (HCQ) shortage occurred, the Foundation’s response was multifaceted, done in collaboration with others, as well as on our own, to ensure there was awareness and consideration for Sjögren's patients who depended on this life-saving medication. Advocating for the best interests of all Sjögren’s patients, the Foundation was in contact with the U.S. Food & Drug Administration (FDA) and the White House Coronavirus Task Force regarding the abrupt shortage; joined the American College of Rheumatology in reaching out to all state governors, insurance commissioners and boards of pharmacy to ensure refills for autoimmune patients were a top priority; and corresponded with PhRMA and HCQ manufacturers to ensure they understood the urgency while also encouraging an increase in production.
This year the Foundation revamped our patient programs which included expanding our outreach and increasing our communication. Early on, we organized 22 patient support town hall meetings to focus on the health and well-being of all Sjögren’s patients. We also moved our two-day National Patient Conference to June and made it a virtual event to allow safe participation for more than 850 registrants and in November, we held a one-day virtual patient conference that had more than 600 registrants. The Foundation continues to publish our popular patient newsletter, Conquering Sjögren’s, and we have worked with support group leaders to provide online virtual support groups. Additionally, the Foundation website, www.sjogrens.org remains the top source for relevant and valuable Sjögren’s information for patients, their families and healthcare providers.
The Foundation has continued to make great strides in leading and encouraging research having built relationships with nine (9) different pharmaceutical companies who are now in various phases of clinical trials for a drug for Sjögren’s. Between those companies, there are 21 compounds being evaluated that are brand new for the disease. The Foundation has introduced Sjogren’s patients to these companies to help educate them about the disease as well as what patients want in a therapeutic to treat their disease. The Foundation is also actively engaged in helping companies design their clinical trials to help make them more patient friendly while also launching our training and certification platform for clinical trial investigators to ensure standardization of training.
The Foundation was extremely proud to complete the first-ever guidelines on pulmonary manifestations of Sjögren’s which will be published in the peer-reviewed publication, CHEST. These are the most robust guidelines from the Foundation yet with over 50 recommendations and will greatly impact the treatment of Sjögren’s patients. The Foundation was grateful to all doctors who volunteered their time and expertise to write our recommendations after reviewing nearly 1,200 studies that were identified and reviewed for relevance. This work was then evaluated and approved by a multi-specialty Consensus Expert Panel (CEP) that was comprised of 40 rheumatologists, 21 pulmonologists, and 7 members, all of whom were Sjögren’s patients or family of a patient.
As the premiere funding organization for Sjögren’s research, we are extremely proud of the leadership role that we have taken to move Sjögren's research forward and are even more excited about what is yet to come. This past fall, the Foundation announced the selection of three research grants to received funding from the Foundation. Our program offers two distinct grant types; the Sjögren’s Foundation High Impact Research Grant at $75,000 and the Sjögren’s Foundation Pilot Research Grant at $25,000. These higher level awards are now attracting strong applicants with new and innovative ideas.
In 2020, we officially changed our name from the Sjögren’s Syndrome Foundation to the Sjögren’s Foundation. The Foundation’s Board of Directors and Medical Scientific Advisors agreed that the use of “syndrome” did not appropriately communicate the seriousness of the disease and the significant impact that Sjögren’s has on patients. The change allows the Foundation to lead the charge to redefine Sjögren’s formally as a disease while working to ensure that it receives the attention, funding and recognition it deserves. In addition, the Foundation launched a new cutting-edge website in April while also debuting a new logo and new branding for the organization.
Sjögren's Foundation 2019 Impact
The Foundation continues to expand our efforts and is currently working with 11 pharmaceutical companies looking to develop potential therapies for Sjögren’s.
The Clinical Trial Consortium, the Foundation’s international initiative to increase the availability and accessibility of therapies to treat Sjögren’s, continues to 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.
In 2019, the Foundation designed and launched the first ever online Sjögren’s Training and Education Platform (STEP) to be used to train clinical trial investigators.
The Sjögren’s Foundation launched an aggressive initiative to develop the very first Clinical Practice Guidelines for Sjögren’s which aim to improve the quality of care for Sjögren’s patients by developing guidelines for the assessment and management of a variety of disease manifestations.
Completed in 2015, Phase 1 of this initiative resulted in the development and publication of the first U.S. guidelines for the management and treatment of:
- Systemic Manifestations in Sjögren’s Patients
- Oral Management: Caries Prevention in Sjögren’s Patients
- Ocular Management in Sjögren’s Patients
Phase 2 of the Foundation Clinical Practice Guidelines are well underway and will significantly increase the guidance offered on the management and treatment of Sjögren’s. Some of the topics to be addressed in Phase 2 include guidelines for pulmonary complications, central nervous system involvement, peripheral nervous system involvement, lymphoma and vasculitis.
The Foundation is the premiere funding organization for Sjögren’s research and we are extremely proud of the leadership role that we have taken to move Sjögren's research forward. Over the past 10 years, the Foundation has invested nearly $4 million to fund a broad range of scientific initiatives, including the support of clinical and scientific studies through Foundation research grants.
This past fall, the Foundation announced a new funding opportunity for researchers, called the SSF High Impact Research Grant. This grant, offered at $75,000, was awarded for the first time this past Spring.
The Foundation also awarded a Foundation Pilot Research Award at $25,000.
In addition to our new 2019 grants, three additional grants were renewed for previous year awardees.
Every April for the past 19 years and in various cities around the country, the Foundation hosts the National Patient Conference, its premiere two-day educational conference for patients and their family. In 2019, over 550 people attended in the Boston, MA area. This was the largest attendee turnout ever for a NPC.
The Foundation also attempts to hold one-day regional conferences around the country and in November 2019, 175 people attended a one-day patient conference in Cleveland, OH.
The Foundation supports more than 65 local support groups in various cities throughout the United States. These groups connect patients together while also providing vital sharing of information about living with Sjögren’s
The Foundation publishes Conquering Sjögren’s, our patient newsletter that is sent to more than 10,000 people. The Foundation also has developed fact sheets, brochures and other educational resources.
In 2019, the Foundation created and launched a new web series on YouTube called Exploring Sjögren’s. This documentary style talk show discusses the various complications of Sjögren's while also sharing the work being done by the Foundation.
The Foundation website - www.sjogrens.org - remains the top source for relevant and valuable Sjögren’s information for patients, their families and healthcare providers and was viewed by more than 1.2 million unique visitors in 2019. In 2020, the Foundation overhauled the website to help improve the patient and visitor experience and to provide a welcoming, engaging, easy to use and mobile-friendly site.
In 2017, the Foundation released the results of our “Living with Sjögren’s” patient survey conducted in partnership with Harris Poll and with nearly 3,000 responses to help us better tell the story of the Sjögren’s patient, their quality of life and the burden of their illness.
In 2018, the Foundation was excited to announce that we surpassed our 5 year breakthrough goal: To Shorten the time to diagnose Sjögren’s by 50% in 5 years and it now currently takes 2.8 years, down from 6 years, to receive a proper diagnosis for Sjögren’s.