Team Sjögren's just conquered Las Vegas! 

What is Team Sjögren's?
Team Sjögren's is a program designed to help you train and prepare to participate in a marathon (26.2 miles) or half-marathon (13.1 miles). In exchange for training and support, you will help to raise awareness and funds towards research into a cure for Sjögren's.

 

For more information on joining Team Sjögren's, please contact Steven Taylor at (800) 475-6473 x211 or staylor@sjogrens.org


Team Sjögren's Viva Las Vegas
Strip at Night: Rock 'n' Roll Marathon Series

December 2, 2012

Team Sjogren's

 

 Click Here to see more photos from Team Sjogren's Vivia Las Vegas!

 

The Sjögren's Syndrome Foundation testified before the U.S. House Ways and Means Oversight Subcommittee on Capitol Hill about the cost burden of over-the-counter (OTC) drugs and products patients depend on to treat Sjögren's.

The SSF was the only patient group represented at the hearing.

View the hearing and Steven Taylor, SSF CEO, testimony, which is shown around the 17 minute mark. 

http://waysandmeans.granicus.com/MediaPlayer.php?view_id=2&clip_id=279

Check out the recent NIH Radio broadcast of Dr. Gabor Illei discussing the signs, symptoms and treatments of Sjögren.

 

Click Here to see a transcript of the report or download an MP3File of the audio.

 

This April, we would like you to go BOLD BLUE with us! 

Keeping with our new Breakthrough Goal, 50 in 5, our goal is to have 50 companies go Bold Blue by  hosting a dress down blue jeans day in honor of Sjögren's!

Download a Bold Blue Day Starter Kit

or

Click here to see what companies are participating 

The Sjögren’s Syndrome Foundation proudly announced a new 5- year breakthrough goal in the January issue of The Moisture Seekers.

 “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

Click Here to find out more about the SSF's new Breakthrough Goal!

Read our Press Release below or Click Here for a Copy

 

  Sjögren's Syndrome Foundation Launches 5-Year Breakthrough Goal

The Sjögren's Syndrome Foundation (SSF) is kicking off 2012 by launching a bold 5-Year Breakthrough Goal:

 “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

Sjögren’s ("SHOW-grins") is the second most prevalent autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed.  Early diagnosis and treatment are important for preventing complications with Sjögren’s. Unfortunately, reaching a diagnosis is often difficult and has been found to take an average of over 5 years from the onset of symptoms.

Steven Taylor, CEO of the SSF, says “We cannot sit on the sidelines and let those patients suffer any longer. That is why the SSF is taking action to ensure we do everything we can to increase awareness and help those patients yet to be diagnosed.”

Sjögren’s is a systemic disease in which the body’s immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eyes and dry mouth, but fatigue, muscle and joint pain are also prominent symptoms. Serious manifestations can occur, such as life-threatening lung involvement, central nervous system complications and disorders of cognitive functioning. Nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children.

Venus Williams, the tennis star who withdrew from the US open after announcing her Sjögren’s diagnosis, stated that she had suffered with issues from Sj ögren’s for a while without being diagnosed.  “Being diagnosed with Sjögren’s was a huge relief because I finally knew what was happening with my body,” said Williams, illustrating one example of what a correct diagnosis means for Sjögren’s sufferers.

With an aggressive timeline of actions and goals to accomplish ahead, the SSF believes this initiative will change the face of Sjögren’s. “By getting more patients diagnosed, physicians will become more knowledgeable about Sjögren’s and all patients will see a benefit from that,” states Taylor.

To find out more about the 5-Year Breakthrough Goal and how you can help, contact the SSF office at 1-800-475-6473 or visit their website, www.sjogrens.org.

 **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.**