SSF 5-Year Breakthrough Goal:     
1 Year Update

(Article from The Moisture Seekers January 2013)  

It is hard to believe that a year has gone by since the Sjögren’s Syndrome Foundation announced the launch of our 5-Year Breakthrough Goal in the January 2012 issue of The Moisture Seekers. Our Goal: “To shorten the time to diagnose Sjögren’s by 50% in five years!”

That means by 2017 the SSF hopes to shorten the time it takes to be diagnosed with Sjögren’s to less than 2.5 years from the time a person started seeking a diagnosis. From surveying patients who were diagnosed in 2011, the SSF worked with a marketing research company and determined that it currently takes an average 4.7 years to receive an accurate diagnosis. The SSF Board of Directors and Medical and Scientific Advisory Board believe that this is too long!

As a patient-focused organization, it is our hope that by getting more patients diagnosed, all patients will benefit. As physicians start seeing more Sjögren’s patients in their practice, they will need to become more knowledgeable about the different manifestations of Sjögren’s and the treatment options, not to mention, those who get diagnosed will not need to struggle for as long as those who went before them. Many of our members waited for many years to receive a proper diagnosis and we know you join with us in not wanting any patient to suffer and wait that long.

As you may remember, the SSF plans to achieve our 5-Year Breakthrough Goal by focusing on three specific action items:

  • Increasing public awareness
  • Increasing involvement from our friends and partners
  • Increasing education and awareness among healthcare professionals

Increasing public awareness

With an estimated four million people in America living with Sjögren’s, the SSF is working toward making Sjögren’s a household name. One way we are working to achieve this is by utilizing our Awareness Ambassadors, who volunteer their time to distribute Sjögren’s educational information in their local communities. The theme for our 2011-2012 Awareness Ambassador Program was entitled Defy the Dry.™

Since last January, we recruited an additional 162 individuals from around the country who have stepped up and volunteered to become an Awareness Ambassador. This now gives us 374 Awareness Ambassadors – well on our way to our goal of having 500 by 2014! Together, our Ambassadors have distributed over 14,500 material kits about Sjögren’s to over 1,700 healthcare professionals in their local communities to make sure their communities understand the importance of discussing their symptoms with their doctors. Additionally, the Ambassadors have sent over 5,800 emails to friends and family to raise Sjögren’s awareness. Our Ambassadors’ incredible effort has been a first step toward reaching our Breakthrough Goal.

The SSF has also started using social media to make Sjögren’s information easily accessible to the general population. To date, the SSF has 6,807 Facebook followers, 971 Twitter followers and 6,118 Blog viewers. While our presence on social media is a tool to get Sjögren’s information out to the masses, we encourage everyone to use these online outlets as a way to connect with other patients and share their Sjögren’s story.

Additionally, the SSF saw a huge increase in media attention around Sjögren’s since Venus Williams (professional tennis player) and then Shannon Boxx (U.S. Olympic soccer player) announced they both had Sjögren’s. Thousands of articles were written in 2012 and we continue to see Venusand Shannon sharing their story whenever interviewed by the media. The SSF is working with Shannon Boxx on various initiatives for 2012 and we are currently trying to find a partnership with Venus Williams that will fit her active lifestyle of professional tennis and launching her own fashion line called “EleVen.”

Increasing involvement from our friends and partners

This is another critical aspect to our Breakthrough Goal and the SSF is busy building partnerships with various companies and non-profit organizations to help further our goal. First, the SSF is partnering with other autoimmune disease organizations to help co-brand our various diseases – especially those that regularly coincide with Sjögren’s. We appreciate the assistance of these other organizations and are proud to be in various coalitions with them to help advocate on Capitol Hill among other awareness activities

Second, the SSF is proud of our partnerships with various pharmaceutical companies who help the SSF increase awareness in many ways. First, some companies assist us in underwriting educational and/or awareness campaigns. Without their support, some of these campaigns would not be cost effective and we truly appreciate their support. In 2012, the SSF asked many of our partnering pharmaceutical companies to utilize their staff to help us educate physicians and/or dentists with which they are building new relationships. We gave them SSF materials to leave with physicians and dentists in the hope that they would display our information for their patients. This program helped increase our presence in many physicians’ and dentists’ offices in 2012.

Finally, we have asked our contacts, friends and families to help us spread the word. Our Sjögren’s Walkabouts, Sip for Sjögren’s and our Team Sjögren’s events had record turnouts as we focused on increasing awareness while raising funds for Sjögren’s. We saw an increase of individuals willing to share their story with family and friends. As Steven Taylor, CEO of the Sjögren’s Syndrome Foundation, said, “every time Sjögren’s patients share their story, they are helping another person to understand the disease and, in return, they may be able to help someone else in their life who is suffering from Sjögren’s but doesn’t know it.” The SSF continues to receive stories from patients who were diagnosed with Sjögren’s because a friend or family member heard about the disease and was able to explain to the patients and thus prompted them to go see a doctor!

Increasing education and awareness among healthcare professionals

Having healthcare professionals fully understand Sjögren’s is something that all patients know is urgently needed. That is why the SSF continues to make professional education a top priority among this group. This fall, the SSF was once again able to serve as an exhibitor at the 2012 American College of Rheumatology Conference. This annual conference and scientific meeting was attended by 16,000 rheumatologists and healthcare professionals who work in rheumatology. This year, Sjögren’s received more attention than ever before.

First, the SSF met with hundreds of interested physicians who wanted SSF brochures for their offices. Sjögren’s was highlighted in four specialized Sjögren’s breakout sessions including a new session called “Curbside Consult,” where physicians attend to discuss difficult-to-diagnose cases and their final diagnosis. The SSF was also invited by the ACR Planning Committee to give an hour-long presentation on our Clinical Practice Guidelines. We are proud to say that over 600 rheumatologists attended this presentation given by Dr. Fred Vivino, Dr. Ann Parke and Dr. Steven Carsons. Additionally, the SSF was able to host three very important private meetings to discuss various issues surrounding Sjögren’s including one on Novel Diagnostics for Sjögren’s. As part of the SSF’s goal, we hope to work with companies and researchers who are looking at novel diagnostics for Sjögren’s. We hope with the right focus and energy that a better diagnostic tool than what is currently available can be found. That alone would help to speed up a Sjögren’s diagnosis.

In addition to ACR, the SSF was invited to attend and present at the California Dental Association Conference, the Florida Dental Association Conference and the American Optometric Association Conference. Cumulatively at these three conferences, the SSF was able to present to over 1,000 medical and dental professionals about Sjögren’s, its diagnosis and its management. A big highlight came at the California Dental Association’s Sjögren’s presentation where over 400 dental professionals filled the room and even more people crowded around the doorway in order to see our presentation and receive an SSF informational packet. In addition to these great presentations, another 1,526 new physicians/ dentists signed up to receive the SSF’s Sjögren’s Quarterly newsletter that is tailored to medical professionals. Look in this issue of TMS for more information about how patients can subscribe to this newsletter.

As you can see, the SSF has been busy this past year as we launched our 5-Year Breakthrough Goal. We knew it wouldn’t be easy to achieve but the success we have made in our first year is remarkable. The momentum our volunteers and patients have created is propelling us into 2013, but we still need more hands to make it possible! The dream of making Sjögren’s a household name is only possible if everyone will do something to help. Visit the Get Connected section of our website to learn how you can stand up to help – but for now share your story and tell others about the SSF. This alone will make people realize how common Sjögren’s really is, and together we can conquer Sjögren’s!