When a person is diagnosed with Sjögren’s syndrome, they often don't know where to begin.

This program will introduce you to three Sjögren’s patients who will share their journey with you. In addition, you will hear from Sjögren’s experts about the causes, treatments and manifestations of Sjögren’s. From there, we hope you will have a place to begin as you develop a partnership and treatment plan with your physician.

Click Here to View the Video 

Medical professionals can be provided a supply of DVDs to give out free-of-charge to their patients. Contact the Sjögren’s Syndrome Foundation office at 800-475-6473 to learn more.

Click Here for a Copy of Our Press Release

 

FOR IMMEDIATE RELEASE 

Contact Information:
Elizabeth Trocchio or Steven Taylor
Sjögren's Syndrome Foundation
Direct Line: 301-530-4420, press 0
Fax: 301-530-4415
Email: staylor@sjogrens.org
Website: www.sjogrens.org 

 

Sjögren’s Syndrome Foundation Supports Venus Williams 

The Sjögren's Syndrome Foundation (SSF) was saddened to hear about Venus Williams’ diagnosis of Sjögren’s syndrome and supports her courageous decision to step forward and share her diagnosis.

Steven Taylor, CEO of the Sjögren’s Syndrome Foundation, states that “on behalf of the 4 million Americans with Sjögren’s, we applaud Venus for publicly stepping forward and shedding light on this serious autoimmune disease. Her courage gives hope to the many who live silently with Sjögren’s because of the lack of awareness around this disease.” 

Although not always life-threatening, Sjögren’s can cause debilitating and life-long complications and have a profound affect on one’s quality of life. At the same time, many Sjögren’s patients fortunately live healthy and productive lives free of major complications.

Sjögren’s syndrome is the second most common autoimmune rheumatic disease and 3x more common than better known related diseases such as Lupus and Multiple Sclerosis.   The disease affects the moisture-producing glands which can cause dry mouth and dry eye.  In addition, fatigue, muscle pain and joint pain are prominent symptoms while serious manifestations can occur with life-threatening lung involvement, central nervous system complications and cognitive functioning.

As Venus stated, she “is thankful to finally have a diagnosis,” and the Sjögren’s Syndrome Foundation is glad that she now has peace in knowing what was causing her symptoms. Unfortunately, many Sjögren’s patients face the same struggle with trying to get a diagnosis that, on average, takes 6.5 years. The Sjögren’s Syndrome Foundation is launching a major new initiative this fall aimed at reducing the time from onset of symptoms to obtaining a diagnosis.

This October, the Sjögren’s Syndrome Foundation will formally announce plans to achieve a new breakthrough goal of “shortening the time from the onset of symptoms to a Sjögren’s diagnosis by 50% over the next 5 years.” The SSF will be introducing national initiatives and programs to help educate the general public and healthcare professionals. Steven Taylor, CEO of the Foundation said, “We hope Venus will consider helping us with this bold initiative, as it will take many to make this goal a reality.”

 **Arrangements can be made for interviews with local Sjögren's patients, healthcare professionals as well as Steven Taylor, CEO, of the Sjögren’s Syndrome Foundation.* 

6707 Democracy Boulevard, Suite 325 ~ Bethesda, MD 20817 ~ 301-530-4420 ~
FAX 301-530-4415
www.sjogrens.org ~ email ssf@sjogrens.org

The Foundation is honored to have Katie, the daughter of a Sjögren's patient, create an informational video on Sjögren's as a student project.

Katie attended our National Patient Conference, Greater Washington Region Walkabout, and Philadelphia Sjögren's Walkabout to learn more. Thanks all who participated and helped Katie to create such an informative and interesting video on Sjögren's.

Click Here to view the video.

 

 

Join the SSF today and receive these great membership benefits (and much more)!

 

  • The Moisture Seekers newsletter: This monthly print newsletter contains the latest information on Sjögren's, practical tips for daily living, and answers to medical questions from the experts. Curious what The Moisture Seekers looks like? View an electronic sample of the newsletter by downloading it here.
  • Exclusive access to the members-only section of sjogrens.org, featuring resources unavailable to other site visitors such as archives of the most popular newsletter articles, our online product guide and access to our online community.

  • Members-only discounts on a variety of products and services such as The Sjögren's Syndrome Handbook and SSF National Patient Conferences.

  • Providing the Foundation with one more voice to increase awareness, educate others, and encourage research – all of which help in the fight to conquer Sjögren's!
     

 

If you have any questions or want to contact the Foundation, please call us at 1-800-475-6473. Remember, you are not alone. The Sjögren’s Syndrome Foundation staff and volunteers are working on your behalf to conquer Sjögren’s.

Congratulations to our 2011 Team Sjögren’s members who completed the Nashville Country Music Marathon and Half Marathon on April 30th.

Team Sjogren's 2011

This year’s team was our biggest ever with 24 runners raising over $70,000 for the fight against Sjögren’s. The team included daughters, husbands, sons and friends of Sjögren’s patients as well as a few patients themselves. They were victorious as they crossed the finish line after months of training. The team spanned in age from 18 to 67 and represented all parts of the country!

2011 Team Sjögren’s
Marathoners
 
 Penny Anderson
 Juliann Bannon
 Rob Bannon
 Kirk Beckendorf
 Gia Casale
 Mabel Chan
 Jane Clow
 Julie Conquest
 Nancy DeFurio
 Ken Economou
 Anne Economou
 Kalla Ford
 Lauren France
 Dan Fuoco
 Donna Gotshall
 Kim Gross
 Susan Hines
 Stacey Mize
 Anne Marie Pelletier
 Eric Pratt
 Steven Taylor
 Cathy Taylor
 Hannah Yu
 Jay Do Yu

Many of our members signed up to be a part of Team Sjögren’s as a way to give back and help fight this serious, chronic disease. Their journey leading up to the race was inspiring, challenging and rewarding, all at the same time. Seeing all of our runners make it across the finish line, and knowing everything they had been through in their training, it really was an amazing day!

This year’s team had 10 runners in the full marathon (26.2 miles), including our very own CEO, Steven Taylor, and 14 others in the half marathon (13.1 miles). All 24 runners finished the event and the SSF is so proud to have had them represent us at this year’s Nashville Country Music Marathon.

As difficult as the training and the race were, each runner knows the real challenge is living with Sjögren’s. That is what motivated each Team Sjögren’s member to step up to train while raising a minimum of $2,600 for the SSF. All of our runners had a different story to tell, from being patients themselves or having a loved one with Sjögren’s. In the days before the race as they gathered in Nashville, Team Sjögren’s members enjoyed sharing their tales of the many training miles. And during the race they all were proud to answer the question they received from so many other runners: “What is Team Sjögren’s?” Most inspiring was knowing how debilitating this disease can be and yet seeing 10 patients themselves out there running among the competitors.

So when the sun set in Nashville on April 30th, there were 24 Team Sjögren’s runners proud of accomplishing what they set out to do – officially being able to call themselves “marathoners” and, most importantly, having run and crossed the finish line as they represented Sjögren’s patients worldwide!