This past year has been an unprecedented time in the world, yet we are proud of how the Sjögren’s Foundation has been able to continue providing valuable and needed support to all Sjögren’s patients.
It is because of our generous donors, healthcare professionals, and volunteers that we were able to effectively respond to the COVID-19 crisis while at the same time, not let it impact our valuable work and efforts.
Here are a few highlights from 2020 that show how valuable you support is and how together, we are make a real difference in Sjögren’s.
PROVIDING LEADERSHIP & GUIDANCE DURING THE COVID-19 PANDEMIC
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 provided regular updates on the Foundation’s ongoing response to COVID-19. We also developed a frequently asked questions page on our website, which regularly has answers added to it as new questions arise.
SERVING AS THE VOICE OF ALL SJÖGREN’S PATIENTS
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 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 encouraging an increase in production.
PROVIDING VALUABLE PATIENT SUPPORT & EDUCATION
Early on, the Foundation organized 22 patient support town hall meetings focused on the health and well-being of all Sjögren’s patients. We moved our two-day National Patient Conference to a virtual event which had more than 850 registrants, and in November, we held a one-day virtual patient conference with more than 600 registrants. The Foundation continues to publish our popular patient newsletter, Conquering Sjögren’s, and we are working with support group leaders to provide online virtual support groups. The Foundation website, www.sjogrens.org, also remains the top source for relevant and valuable Sjögren’s information for patients, their families and healthcare providers.
GETTING CLOSER TO NEW THERAPEUTICS FOR SJÖGREN’S
The Foundation has 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 Sjögren’s patients to these companies to help educate them about the disease as well as helped recruit patients to participate in their clinical trials. The Foundation is also actively engaged in helping companies design their clinical trials to be patient friendly and launched our training and certification platform for clinical trial investigators to ensure standardization of training.
EXPANDING CLINICAL PRACTICE GUIDELINES
The Foundation recently completed 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 yet with over 50 recommendations. All the doctors involved 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 evaluated and approved by a multi-specialty Consensus Expert Panel comprised of 40 rheumatologists, 21 pulmonologists, and 7 Sjögren’s patients or family of a patient.
IMPACTING SJÖGREN’S RESEARCH
This past fall, the Foundation announced the selection of three research grants – the second group under the Foundation’s newly revamped 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 Foundation also provided no-cost extensions to current grantees to allow for extra time given the current public health crisis and resulting barriers to work.
USHERING IN A NEW ERA FOR SJÖGREN’S
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.
We thank you in advance for considering a year-end donation today to help the Foundation continue to fight Sjögren’s on behalf of all patients. Each and every gift helps to achieve even greater success in 2021!
All the best,
President & Chief Executive Officer