Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Why I Run for Team Sjögren's: Dr. Scott Lieberman

Posted on Mon, Oct 14, 2019

SSF Turkey Trot 2019“How did you first become involved with the Sjögren’s Syndrome Foundation?”

I am a pediatric rheumatologist with an interest in better understanding Sjögren’s in children. This naturally led to me to connect with the Sjögren’s Syndrome Foundation (SSF). My first formal interaction with the Foundation was in 2015, when the SSF invited me to contribute to their publications to help raise awareness that children get Sjögren’s too. Along with a colleague and friend, Dr. Jay Mehta at the Children's Hospital of Philadelphia, we wrote articles for The Moisture Seekers, Sjogren’s Quarterly and put together an SSF Patient Education Sheet on pediatric Sjögren’s. This was a start to many additional interactions with the Foundation, which have been great experiences for me on many levels. I am constantly amazed by how much the SSF does to promote awareness and to help better understand Sjögren’s in all people, in order to develop better treatments to help improve the quality of lives of those with this potentially devastating, yet for some reason often overlooked, disease.

20171123_083926“What made you and your son decided to run a Turkey Trot race for Team Sjögren's?”

A few years ago, my son Tyler developed an interest in running, and we started running 5K races together. I knew about the Team Sjögren’s running events where participates from around the country would run together as a team, but we have not been able to make those. Then when I saw an email about running as a part of Team Sjögren’s but in one’s own local Turkey Trot, I mentioned it to Tyler. He was excited, so we signed up for our local Turkey Trot in Cedar Rapids, Iowa, and also signed up with the SSF to run this race for Team Sjögren’s.

“Before running in the race, was your son familiar with Team Sjögren's and how did you explain it to him?”

Besides participating in efforts to better understand Sjögren’s in children, I run a basic immunology laboratory focused on understanding what goes wrong with the immune system leading to the autoimmune attack on tear and saliva-producing glands in Sjögren’s. Tyler has heard me talk about Sjögren’s around the house on many occasions and has watched me practice various talks on the different aspects of Sjögren’s. (I actually included Tyler in the acknowledgments during my presentation on Pediatric Sjögren’s at the 2017 SSF National Patient Conference because he had made some suggestions when I was practicing that talk!)

Representing Team Sjögren’s at our local Turkey Trot meant something to both Tyler and myself. He wanted to make sure he understood what exactly it meant to run as a part of Team Sjögren’s. I explained to him that by wearing the Team Sjögren’s shirts and hats and pins to the race we were helping to raise awareness about this disease. I explained to him that this was especially important because many people do not even know that this disease exists, even though it is actually very common. He wanted to know what he should say to people if they asked what Team Sjögren’s was. Then he wanted to practice his response after I explained to him that autoimmune diseases occur when one's immune system gets confused and begins to attack one's own body, and that with Sjögren’s, the immune system attacks the tear and saliva-producing glands but can also attack almost any other part of the body too. That led to many additional questions about the disease and made him much more confident in fully representing Team Sjögren’s on race day.

“Did anyone at the race ask you or Tyler about Sjögren’s?”

Tyler and I wore our Team Sjögren’s shirts, hats, and pins for the race. Undoubtedly, people saw that we represented Team Sjögren’s, but unfortunately, Tyler did not get the opportunity that day to explain to anyone what Team Sjögren’s was. Maybe we ran so fast that no one could stop us to ask!

Click here to purchase your Team Sjögren's Turkey Trot T-shirt/kit with our new 2019 design! 

Click here to order your Team Sjögren's Goes TURKEY Kit!

       Team Sjögrens T Shirt Front   Turkey Trot Kit 

Topics: Team Sjogren's, Turkey Trots

Thank You to Everyone Who Joined Team Sjögren’s Goes Turkey!

Posted on Fri, Nov 30, 2018

Team_Sjogrens_Turkey_Logo-1Sjögren’s Syndrome Foundation friends from around the country joined together to raise awareness in their communities by participating in local Turkey Trots wearing a Team Sjögren’s Turkey T-shirt!

We hope everyone had a great race or walk, while also raising awareness and funds for Sjögren’s! Thank you again to everyone who joined Team Sjögren’s Goes Turkey and stepping up for Sjögren’s! 

Remember to send us pictures of you at your Turkey Trot by emailing them to info@sjogrens.org.

Turkey Trot copy  

Click here to view  SSF T-Shirts & Merchandise 

Topics: Team Sjogren's, Turkey Trots

Your Support is Making a Difference for Sjogren's!

Posted on Fri, Nov 07, 2014

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Your Support is Making a Difference for Sjögren’s!
SSF Fall Update & Ways to Help 

Dear Friends,

It's been a busy and exciting fall here at the Sjögren's Syndrome Foundation! In addition to the SSF's fall community awareness events, the Foundation staff is now getting ready to attend another scientific meeting, the American College of Rheumatology's (ACR) Annual Meeting, to focus on professional education of Sjögren's. 

At the ACR Annual Meeting, the SSF will be both an exhibitor and presenter, in addition to holding working groups for those who treat Sjögren's. This meeting is the SSF's biggest venue for reaching rheumatologists and providing them the educational materials needed to better identify and treat their Sjögren's patients.

These SSF initiatives and programs that further our mission are only possible because of your support. As you can see below, there are many different ways that you can help this fall. I encourage you to learn about these opportunities and join our fight to conquer Sjögren's!

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On behalf of the SSF, thank you for sharing your story, telling others about the SSF, attending our events, volunteering your time, donating and helping create a future of hope for all Sjögren's patients. 

Sincerely,

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Steven Taylor
Chief Executive Office

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New T-Shirt Design for Team Sjögren’s Turkey Trot Kits! 

Erin faces

Learn what was Turkey Trot Alumni Erin's favorite part of joining Team Sjögren's!

My family and I wore our Team Sjögren’s T-Shirts and as we were racing, multiple people would comment about their friends, family or themselves being affected by this disease. Knowing that the Turkey Trot was bringing people together for a cause I believed in was a wonderful feeling.

 Click Here to read the rest of Erin's Story

 

describe the image Whether you run or not, if you are a patient or know someone with this disease, we are all part of Team Sjögren's. 

Click here to order your Team Sjögren's Goes TURKEY Kit!


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It's CFC Time!

We hope you will consider the Sjögren's Syndrome Foundation when choosing where to allocate your Combined Federal Campaign donation this year!

The SSF's CFC Code is: 10603

Tell your co-workers, friends and family how important it is to choose and write in the SSF on their campaign forms too! Every dollar impacts Sjögren's! For more information, please contact the SSF at 1-800-475-6473.

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NPC

Save the Date: 
SSF National Patient Conference, April 17-18, 2015

 The Grand Hyatt Tampa Bay, Florida 
2900 Bayport Dr,
Tampa, FL 336078

The SSF's annual National Patient Conferences are the best way to learn more about Sjögren's. Over the years, these Conferences have helped thousands of patients and their family members gain a better understanding of Sjögren's while giving them an opportunity to meet fellow Sjögren's patients.

If you want to be your own best patient advocate by gaining a thorough understanding of all the key aspects of Sjögren's, then our National Patient Conferences are for you!
More Details Coming Soon

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Upcoming SSF Events 

November 8, 2014- Nashville Area Sjögren's Awareness Walkabout

November 15, 2014-  Streams in the Desert Trivia in Glen Ellyn, IL

November 15, 2014- Capital Region Sjögren's Awareness Walkabout

November 16, 2014- Boston Sip for Sjogren's

January 9-11, 2015-  Team Sjogren's Disney

February 20, 2015-  Phoenix Sjogren's Walkabout & Health Fair

April 17-18, 2015- SSF National Patient Conference

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

Topics: Walkabouts, Sjogren's, Advocacy, 50in5: Breakthrough Goal, Turkey Trots

What are you doing this Thanksgiving?

Posted on Thu, Nov 15, 2012

Erin, diagnosed with Sjögren’s in February of 2008, challenged herself to run as a part of Team Sjögren’s Turkey Trots in 2011 and shares her experience below of running while managing her health. Here’s Erin’s story:  

I ran track in high school and college and have always enjoyed running, so I got very excited when I heard there was a Team Sjögren’s Turkey Trot fundraising event. I had always wanted to participate in these events and once I knew I could bring awareness and raise money for Sjögren’s, I wanted to do it right away. describe the image

My doctor continuously talks to me about keeping up with my physical fitness, not only for my personal wellbeing but to help fight off sickness that Sjögren’s patients are prone to and I thought joining Team Sjögren’s was a way to accomplish that. Once I decided to run, my husband, Mom, older sister, and her husband, chose to run with me.

Running for long periods of time was definitely difficult and I’m finding my recovery time to be much longer as I get older. I don’t bounce back the way I used to.  However, when I was running the race, knowing that I was running for a cause I’m directly affected by kept me motivated and pushing for the finish line. 

I would train with my husband and made sure I was eating healthy options and sleeping a sufficient amount.  I started noticing the negative effect it would have on my body if I didn’t get enough sleep or ate the wrong food.  Running is hard enough, but when you have a weakened immune system it can take so much more out of you.  You need to have a certain level of mental toughness along with support to get through those hard times.

Even though the training was hard for me, I absolutely loved being able to participate in a race that could not only bring awareness to this disease but also raise funds for a possible cure.  I also liked being able to connect with others who have Sjögren’s.  My family and I wore our Team Sjögren’s T-Shirts and as we were racing multiple people would comment about their friends, family or themselves being affected by this disease. Knowing that the Turkey Trot was bringing people together for a cause I believed in was a wonderful feeling.

The initial thought of getting out there to run or walk in a 5K seemed like a lofty goal, but one of my biggest motivations was knowing that my family and friends were by my side.  It was an incredibly uplifting experience to realize so many people believed in me and donated to my team’s fundraising efforts. I felt so proud of myself when I finished the race. I’m sure I could have run faster, but knowing I completed the race and made my family and friends proud was validation enough for me.

Thank you Erin for sharing your story and stepping up for Sjögren’s by running again this year as a part of Team Sjögren’s Turkey Trots!

describe the imageThis year, we hope you will also start your day of giving thanks by stepping up for Sjögren’s as a part of Team Sjögren’s Turkey Trots!

Click here to order your Team Sjögren's Goes TURKEY Kit!

Topics: Diet, Sjogren's, Team Sjogren's, Turkey Trots

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