The Sjögren's Syndrome Foundation (SSF) began in 1983 in the home of Elaine Harris, a patient. For the past 35 years, the SSF has been honored to support all Sjögren’s patient and the mantra of Elaine—“founded by a patient, for patients” —remains the center of what we do by ensuring that the patient voice is never lost in our efforts.

Over the years, the work of the Foundation has grown and adapted to meet the needs of both current patients and future generations. As we continue to expand our reach and scope as the disease evolves, the SSF volunteer Board of Directors wanted to clearly communicate our vision and what we want to accomplish in the coming years.

Today, the SSF is proud to announce that after months of planning and the involvement of many volunteers, patients, researchers and physicians, we have set a new vision statement.
Click here to read more.

Since publicly announcing her Sjögren's diagnosis in 2016, it has been the SSF’s honor to work with Carrie Ann Inaba, Dancing with the Stars judge, new co-host of The Talk, & SSF National Awareness Ambassador. Once again, I applaud Carrie for being open about her journey with this complex disease and how she learned to become her own best advocate.” -Steven Taylor, SSF CEO

“’It [being diagnosed with Sjögren's] was debilitating,’ says Inaba… ‘I was in so much pain, I just had to survive. I had to stay in bed three days a week, and I’m so fortunate because I had the kind of job where I could do that. There were days I could barely make my coffee because I was so exhausted.’ In the process of coming to terms with Sjögren's, Inaba says she looked inward… ‘I did a lot of soul searching. I learned about who I am besides being a sexy dancer chick. And ironically, as I let all that go, I found my way back to feeling vibrant and radiant again.’” Click here to read more.

Carrie_Ann_pic_3.jpg

SAVE THE DATE: 2019 National Patient Conference

April 5 - April 6, 2019
Boston Area

This spring we invite you to join with fellow Sjögren’s patients, their families, medical experts, and product exhibitors and attend our 2019 National Patient Conference.

Sjögren’s is not the same for every person diagnosed, which is why educating yourself on the most up-to-date information and treatment options is so important.  Attending the SSF National Patient Conference is one way you can gain information from many different sources while also meeting fellow patients.  

This year’s Conference will include opportunities to:

  • • Learn from national Sjögren’s experts, researchers and SSF staff 
  • • Find new products and receive free samples in our exhibitor hall
  • • Share with your fellow patients 
  • • Browse Sjögren’s resources at the SSF Book Table 

We encourage you to take this opportunity to gain an understanding of all the key aspects of Sjögren’s.  This two-day educational experience will give you the tools to take control of your health and learn how to manage and understand your Sjögren’s symptoms and complications.  

Presentation topics will include:

  • • The Complexities of Sjögren’s: An Overview
  • • Fatigue and Sjögren’s
  • • Oral and Ocular Manifestations of Sjögren’s
  • • Sjögren’s Clinical Trials Update
  • • Understanding Blood Changes and Lab Results 
  • • Living with Sjögren’s: A Patient Panel
  • • How Sjögren’s Can Impact the Central Nervous System
  • • Nutrition, Wellness and Autoimmune Disease
  • • And More To Be Announced!

Steven Taylor to Lead 2019 National Health Council Board of Directors

Washington, DC — Dec. 11, 2018 — At its annual membership meeting today, the National Health Council (NHC) elected its officers and new members of the Board of Directors for 2019. Steven Taylor, Chief Executive Officer of the Sjögren’s Syndrome Foundation will be the Chairperson of the NHC Board of Directors for 2019. Other members of the 2019 Executive Committee will be: Chairperson-Elect Ann Palmer, President & Chief Executive Officer, Arthritis Foundation; Vice Chairperson, Gary Reedy, Chief Executive Officer, American Cancer Society; Secretary Matt Eyles, President & Chief Executive Officer, America’s Health Insurance Plans; Treasurer Cassandra McCullough, Chief Executive Officer, Association of Black Cardiologists; and Immediate Past Chairperson Robert Gebbia, Chief Executive Officer, American Foundation for Suicide Prevention.

“Steve is a passionate leader in the patient advocacy community and shaped the development of our 2019-2021 Strategic Plan,” said Marc Boutin, JD, Chief Executive Officer of the National Health Council. Click here to read more.
National Health Council

CHICAGO—“Sjögren’s has proven to be one of our most difficult to diagnose autoimmune rheumatic diseases,” began Frederick B. Vivino, MD, MS, director of the Penn Sjögren’s Syndrome Center, chief of rheumatology at Penn Presbyterian Medical Center and professor of clinical medicine at the Perelman School of Medicine at the University of Pennsylvania, as he opened the session on Sjögren’s syndrome at the 2018 ACR/ARHP Annual Meeting on Oct. 21. Many rheumatologists gathered in the large auditorium, with some forced to sit on the floor to learn about these issues. Dr. Vivino noted that although there is a defined classification for Sjögren’s syndrome, clinicians still face practical challenges in making an accurate diagnosis. In addition, gaps and challenges exist in treating local and systemic manifestations of Sjögren’s syndrom. Click here to read more.

 

More information about the different Sjögren’s programs from this year’s meeting will be published in the SSF member newsletter, “The Moisture Seekers.” Click here to learn more about becoming an SSF member.