Sjögren's Foundation

Sjögren's Foundation Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Visit us at www.sjogrens.org.
The Sjögren's Syndrome Foundation is a 501(c)(3) tax-exempt national voluntary health agency. Founded in 1983 the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren's. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's.
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Focus Group Participants Needed!From time to time, the Sjögren's Foundation works with various companies to help them le...
05/27/2020
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Focus Group Participants Needed!

From time to time, the Sjögren's Foundation works with various companies to help them learn more about what it's like to live with Sjögren's and what type of treatments are needed.

If you would like your voice to be heard at these discussions, learn more by clicking on the link below. Once the Foundation informs you of a focus group opportunity, it is your choice whether to participate or not. Compensation is sometimes provided to take part in these focus groups.

Learn more: https://share.hsforms.com/1QvXmiQTeQV2JoqueSiM57w3619

05/26/2020
Denver Area Virtual Walk for Sjögren’s

Please join us for this weekend’s virtual Denver Area Walk for Sjögren’s! During the online Zoom event, you can connect with other patients, hear from doctors during our “Ask the Doctor” segment of the call, and win door prizes that will be mailed to you.

We know many of you cannot always travel to our Walk for Sjögren’s events and we encourage you to join us as we continue connect in new ways. Click on the link below to learn more about the Denver Area Walk for Sjögren’s or email [email protected]. Our events might look a little different this year, but the positive energy is still the same! #WalkForSjögrens

Learn More: http://events.sjogrens.org/site/TR?fr_id=1373&pg=entry

With honor and gratitude.
05/25/2020

With honor and gratitude.

Focus Group Participants Needed! From time to time, the Sjögren's Foundation works with various companies to help them l...
05/23/2020
share.hsforms.com

Focus Group Participants Needed!

From time to time, the Sjögren's Foundation works with various companies to help them learn more about what it's like to live with Sjögren's and what type of treatments are needed.

If you would like your voice to be heard at these discussions, please fill out the form below to be added to the Foundation’s internal data base.

Once the Foundation informs you of a focus group opportunity, it is your choice whether to participate or not. Compensation is sometimes provided to take part in these focus groups.
https://share.hsforms.com/1QvXmiQTeQV2JoqueSiM57w3619

Thank you to everyone who made last weekend’s DC Area Walk for Sjögren’s a success! The Foundation’s Walk events might l...
05/21/2020

Thank you to everyone who made last weekend’s DC Area Walk for Sjögren’s a success! The Foundation’s Walk events might look a little different this year, but the positive energy is still the same!

Please join us for one of our upcoming Virtual Walk for Sjögren’s events where you can connect with other patients, hear from local doctors during our “Ask the Doctor” segment of the call, and win door prizes that will be mailed to you!

We encourage you to ask family & friends to join the call with you and learn more about Sjögren’s through this fun Zoom event. Click on the link below to learn more about our upcoming Walk for Sjögren’s events or email [email protected]. #WalkForSjögrens
https://www.sjogrens.org/get-involved/find-an-event/walk-for-sjogrens

The Foundation supports World Autoimmune & Autoinflammatory Arthritis Day (#aiarthritisday), May 20. Today is an opportu...
05/20/2020

The Foundation supports World Autoimmune & Autoinflammatory Arthritis Day (#aiarthritisday), May 20. Today is an opportunity for our community to unite to raise awareness about these full body diseases, including the arthritic component. Recognizing the differences, including the causes, can help expedite detection, diagnosis, and access to therapies that can improve quality of life, increase rates of remission, and lower chances for disability.

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. #ThisIsSjögrens

Learn more at www.sjogrens.org.

There's still time to register for today's FREE town hall zoom meeting, “Sjögren’s Medical & Scientific Initiatives Upda...
05/19/2020

There's still time to register for today's FREE town hall zoom meeting, “Sjögren’s Medical & Scientific Initiatives Update” with Steven Taylor, President & CEO, and Kathy Hammitt, Vice President of Medical & Scientific Affairs.

Register now by clicking on the following link:
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619

Register Now! Don’t miss tomorrow’s FREE town hall zoom meeting, “Sjögren’s Medical & Scientific Initiatives Update” wit...
05/18/2020

Register Now! Don’t miss tomorrow’s FREE town hall zoom meeting, “Sjögren’s Medical & Scientific Initiatives Update” with Steven Taylor, President & CEO, and Kathy Hammitt, Vice President of Medical & Scientific Affairs.

Register now by clicking on the following link:
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619

Don’t miss tomorrow’s FREE town hall zoom meeting, “Sjögren’s Medical & Scientific Initiatives Update” with Steven Taylo...
05/18/2020

Don’t miss tomorrow’s FREE town hall zoom meeting, “Sjögren’s Medical & Scientific Initiatives Update” with Steven Taylor, President & CEO, and Kathy Hammitt, Vice President of Medical & Scientific Affairs.

Register now by clicking on the following link:
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619

Sjögren’s Foundation FREE town hall zoom meeting: Medical & Scientific Initiatives UpdateEven with COVID-19, the Foundat...
05/17/2020

Sjögren’s Foundation FREE town hall zoom meeting: Medical & Scientific Initiatives Update

Even with COVID-19, the Foundation staff and volunteers continue to push forward. Hear from Steven Taylor, President & CEO, and Kathy Hammitt, Vice President of Medical & Scientific Affairs, about the Foundation’s continuing commitment to increase our knowledge about Sjögren’s, improve the exchange of ideas to accelerate research, and set the stage for better treatment and management of Sjögren’s.

Kathy and Steven will provide an update into the exciting progress we have made and where we are going in the future.

Register now by clicking on the following link:
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619

The Foundation invites you to run or walk with Team Sjögren's in Chicago this summer! What better time to set a new pers...
05/16/2020

The Foundation invites you to run or walk with Team Sjögren's in Chicago this summer! What better time to set a new personal goal, check off a bucket list, challenge yourself or become more active, than while you are self-isolating at home!

By joining Team Sjögren’s, we will work with you on your personal goals and personalized training plan so you can start to train on your own, near your home!

If you don’t feel you can walk or run in this event, we encourage you to share this on your page and recruit someone else to walk or run in your honor.

To get more details, please contact Kalla, Our Team Sjögren's Coordinator at [email protected] or click on the link below.
http://info.sjogrens.org/join-team-sjogrens-chicago

Have you missed one of the Sjögren'sFoundation's Free Town Hall Meetings? You can listen to a recording of the completed...
05/14/2020
Town Halls

Have you missed one of the Sjögren'sFoundation's Free Town Hall Meetings? You can listen to a recording of the completed calls and sign up for our upcoming call by clicking on the link below.

During these challenging and unsettling times, there is nothing more important to the Foundation than the health and well-being of patients and we remain committed to continuing to provide support that patients can rely on.

https://www.sjogrens.org/living-with-sjogrens/town-halls

During these challenging and unsettling times, there is nothing more important to the Sjögren's Foundation than the health and well-being of all Sjögren's patients and we remain committed to continuing to provide support that patients can rely on. This is why we put together the following patient ...

The Foundation invites you to run or walk with Team Sjögren's in Chicago this summer! What better time to set a new pers...
05/12/2020

The Foundation invites you to run or walk with Team Sjögren's in Chicago this summer! What better time to set a new personal goal, check off a bucket list, challenge yourself or become more active, than while you are self-isolating at home!

By joining Team Sjögren’s, we will work with you on your personal goals and personalized training plan so you can start to train on your own, near your home!

If you don’t feel you can walk or run in this event, we encourage you to share this on your page and recruit someone else to walk or run in your honor.

To get more details, please contact Kalla, Our Team Sjögren's Coordinator at [email protected] or click on the link below.
http://info.sjogrens.org/join-team-sjogrens-chicago

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive...
05/11/2020

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. #ThisIsSjögrens

Learn more at www.sjogrens.org.

Happy Mother’s Day from all of us at the Sjögren’s Foundation!
05/10/2020

Happy Mother’s Day from all of us at the Sjögren’s Foundation!

During these challenging and unsettling times, there is nothing more important to the Sjögren's Foundation than the heal...
05/08/2020
Town Halls

During these challenging and unsettling times, there is nothing more important to the Sjögren's Foundation than the health and well-being of patients and we remain committed to continuing to provide support that patients can rely on.

This is why we put together the following patient support town hall calls. If you have missed a call, you can listen to a recording of the completed calls and sign up for upcoming calls by clicking on the link below.

https://www.sjogrens.org/living-with-sjogrens/town-halls

During these challenging and unsettling times, there is nothing more important to the Sjögren's Foundation than the health and well-being of all Sjögren's patients and we remain committed to continuing to provide support that patients can rely on. This is why we put together the following patient ...

Have you seen our new look?The Sjögren’s Foundation recently debuted our new name, logo, look and website! Due to COVID-...
05/07/2020
Sjögren’s Foundation

Have you seen our new look?

The Sjögren’s Foundation recently debuted our new name, logo, look and website! Due to COVID-19, it took a while to get our name changed on social media, but we are excited to have this page now match our new branding.

The Foundation has dropped the word "syndrome" from our name and literature, and after a year-long project, last month we were able to share with you our newly designed website - www.sjogrens.org. Thank you for your support and we hope you enjoy the new website experience.

Become a member today to enjoy exclusive member benefits and help us conquer Sjögren's

There is still time to register for today's free town hall meeting: Eating Well & Staying Well!Join the Foundation & reg...
05/07/2020

There is still time to register for today's free town hall meeting: Eating Well & Staying Well!

Join the Foundation & registered dietitian Lauri Lang, RDN, LDN, for a free town hall Zoom meeting at 3pm & 8pm EDT. Register now by clicking on the following link:
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619.

Free Town Hall Meeting: Eating Well & Staying Well!Join the Foundation & registered dietitian Lauri Lang, RDN, LDN, for ...
05/06/2020

Free Town Hall Meeting: Eating Well & Staying Well!

Join the Foundation & registered dietitian Lauri Lang, RDN, LDN, for tomorrow’s free town hall Zoom meeting at 3pm & 8pm EDT. Register now by clicking on the following link:
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619.

The Foundation is hosting another patient support town hall call via Zoom tomorrow, May 7. We invite you to join us for ...
05/06/2020

The Foundation is hosting another patient support town hall call via Zoom tomorrow, May 7. We invite you to join us for Eating Well & Staying Well with registered dietitian Lauri Lang, RDN, LDN. The calls are at 3pm & 8pm EDT and you can sign up by clicking the following link: https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619.

Thank you to everyone who supported us yesterday!  The Foundation knows that you have many causes to consider and we are...
05/06/2020

Thank you to everyone who supported us yesterday! The Foundation knows that you have many causes to consider and we are extremely grateful for everyone that chose to support us on #GivingTuesdayNow. And even though the day has passed, you can still support the campaign by making a donation today and take pride in knowing your support will make a difference in the lives of all Sjögren's patients.

Click here to donate now: https://4agc.com/donation_pages/50cf970d-549e-4a7a-8bed-550a46780bb4

The Sjögren's Foundation is proud to participate today in #GivingTuesdayNow, a day of global action for giving & unity i...
05/05/2020

The Sjögren's Foundation is proud to participate today in #GivingTuesdayNow, a day of global action for giving & unity in response to the COVID-19 pandemic. We are asking for your help to ensure that we can continue to provide the support, research & advocacy that Sjögren’s patients rely on.

We encourage you to share this on your page & comment about why the Sjögren’s Foundation is important to you.

Thank you for being a part of Sjögren’s Awareness Month. We hope these 30 posts have helped convey the seriousness of th...
05/01/2020

Thank you for being a part of Sjögren’s Awareness Month. We hope these 30 posts have helped convey the seriousness of this complex disease by giving a glimpse into the lives of patients.

We encourage you share this on your page and comment below about how this disease has affected your life and how you’ve been able to effectively cope. Together we will conquer Sjögren’s!

“Sjögren’s (SHOW-grins) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies & lymphomas.” #ThisIsSjögrens

https://www.sjogrens.org/blog/2020/april-is-sjogrens-awareness-month

Ashelii 35 (diagnosed at 32)It takes a lot to keep my motivation, because the second I feel great, some new pains/sympto...
04/30/2020

Ashelii 35 (diagnosed at 32)
It takes a lot to keep my motivation, because the second I feel great, some new pains/symptom pops up. But Sjögren’s has taught me that you can't give up. We are all on our own unique journey and it's okay to invest in our health. #ThisIsSjögrens

Sjögren’s (SHOW-grins) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies & lymphomas.

We encourage you to share this on your page to raise awareness of Sjögren's. https://www.sjogrens.org/blog/2020/april-is-sjogrens-awareness-month

Tasha 46 (diagnosed at 5)I was very sick as a child, but my parents taught me to be tough. My best tip is the advice I r...
04/29/2020

Tasha 46 (diagnosed at 5)
I was very sick as a child, but my parents taught me to be tough. My best tip is the advice I received from my father when I was 5. “You can do this. You can live with this.” Sjögren’s patients have to be strong. We can handle this TOGETHER! #ThisIsSjögrens

We encourage you to share this on your page & click on the link below to learn more about free community Zoom calls from the Sjögren’s Foundation.
https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619

There's still time to earn a $10 dollar donation bonus for the Foundation just by shopping online!If you sign up with IG...
04/28/2020
iGive - You Shop. Your Charity Gets Money. For Free.

There's still time to earn a $10 dollar donation bonus for the Foundation just by shopping online!

If you sign up with IGive and shop by 4/30, they will give a $10 bonus donation to the Foundation. We encourage you to share this on your page and tell friends/ family to support Sjögren’s patients just by shopping.
http://www.igive.com/ssf

iGive is a free service where shopping at any of 2405 stores like Travelocity, Target, Overstock, and many more, means a donation to your favorite cause.

Trista 32 (diagnosed at 29 but symptomatic since childhood) Sjögren’s means that you have to become your biggest advocat...
04/28/2020

Trista 32 (diagnosed at 29 but symptomatic since childhood) Sjögren’s means that you have to become your biggest advocate. I found that educating yourself is a necessity. One of my favorite resources is "The Sjögren’s Book" by Daniel J. Wallace. #ThisIsSjögrens

We encourage you to share this on your page & click on the link below to learn more about "The Sjögren’s Book.”
https://www.sjogrens.org/shop/the-sjogrens-book-fourth-edition

Ayyu 37 (diagnosed at 35)I used to “power through” symptoms because I have a high pain tolerance, but Sjögren’s has taug...
04/27/2020

Ayyu 37 (diagnosed at 35)
I used to “power through” symptoms because I have a high pain tolerance, but Sjögren’s has taught me that I need to listen to my body. I have also learned to be kinder to myself both mentally and physically. A positive attitude is key. #ThisIsSjögrens

We encourage you to share this on your page & click on the link below to learn more about Sjögren’s Awareness Month. https://www.sjogrens.org/blog/2020/april-is-sjogrens-awareness-month

Tiffany 33 (diagnosed at 20)My most difficult symptoms are chronic fatigue, inflammation, frequent headaches, vision iss...
04/26/2020

Tiffany 33 (diagnosed at 20)
My most difficult symptoms are chronic fatigue, inflammation, frequent headaches, vision issues, severe dry eyes, neuropathy, muscle weakness & pain. I wish people understood that going on a diet & getting exercise is not a cure. Yes, those things can help but it’s not a cure. If it was that simple, I would have been cured a long time ago. Some days I feel pretty good & can handle my symptoms. Other days, I feel like I’m dying. #ThisIsSjögrens

We encourage you to share this on your page & click on the link below to learn more about Sjögren's Awareness Month.
https://www.sjogrens.org/blog/2020/april-is-sjogrens-awareness-month

04/25/2020
share.hsforms.com

During these challenging and unsettling times, there is nothing more important to the Sjögren's Foundation than the health and well-being of all Sjögren's patients and we remain committed to continuing to provide support that patients can rely on. This is why we have put together the following patient support town hall calls via Zoom that we hope will help at this difficult time. Topics will include:

“COVID-19; Updates From the Sjögren's Foundation” presented by Steven Taylor, Sjögren's Foundation President & CEO

“Creative Ways to Keep Busy” presented by Cathy Taylor, Sjögren’s Patient

“Exercise: Tips for Staying Active While at Home” presented by Mary Wiseman, Personal Trainer

“Eating Well / Staying Well” presented by Lauri Lang, RDN, LDN

“A Product Showcase” presented by OTC Product Company Representatives

“Sjögren's Medical & Scientific Initiatives Update” presented by Steven Taylor, Sjögren's Foundation President & CEO and Kathy Hammitt, Sjögren's Foundation Vice President of Medical & Scientific Affairs

To choose the calls you want to sign up for, click on the link below: https://share.hsforms.com/1XvHc4oAOTEadwbs-dk5llQ3619

Susan 60 (diagnosed at 45)It took me a while to be diagnosed with Sjögren’s because it can mimic other autoimmune diseas...
04/25/2020

Susan 60 (diagnosed at 45)
It took me a while to be diagnosed with Sjögren’s because it can mimic other autoimmune disease. I wish people knew that when I speak and sound hoarse, it's because of Sjögren’s and not that I'm catching a cold or getting sick. #ThisIsSjögrens

We encourage you to share this on your page & click on the link below to learn more about patient support town hall virtual meetings.
https://www.sjogrens.org/member-community/patient-support-town-halls

Address

10701 Parkridge Blvd., Suite 170
Reston, VA
20191

General information

Follow us on twitter: @SjogrensOrg https://twitter.com/SjogrensOrg Learn about becoming a member: http://info.sjogrens.org/become-a-member/?&t=64179#2475263_NewModuleAnchor

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Comments

I have multiple autoimmune syndrome, but my Sjogrens is at its peak right now. I haven’t received meds yet (Covid shut down). I literally can barely see and I can’t drive right now, due to it. Can’t you suggest options that helped your quality of life? Thank you so much for your help!
Friends, family and really anyone who suffers; your answer to xerostomia/dry mouth has arrived. SalivaMAX will treat it, not mask it. Feel free to reach out to me.
Hello I would like to ask you if you also have problems swallowing food or medicine. And if so - how do you solve this problem? Thank you
Has anyone had weight loss surgery with Sjogrens?
Hello, Has anyone with Sjogren's, had success doing an AIP diet or trying a more holistic approach?
Does the weather affect anyone? I was doing pretty good recently and it got cold overnight and I woke up in SO much pain. All of my joints are hurting. 😪
What is the survival rate after Difuse Large B Cell Lymphoma for a Sjorgen's petient.
Has anybody heard of or been diagnosed with pots syndrome.
I have been waiting MONTHS for Bausch & Lomb to resume production of Lacrisert ophthalmic inserts. I have Sjogren’s syndrome and severely dry eyes is probably my worst symptom. I have been using Lacrisert for over 20 years because NO other drop or medication has been effective. It has been three months since I was last able to fill my prescription and was told it would be available in spring. Now, thats changed to July. I’m self employed and losing work because there are days where I simply cannot see to drive or do anything else but load my eyes up with ineffective drops just to stop the intense pain and discomfort. Bausch & Lomb offers no explanation and NO assistance and certainly NO empathy. And they hold a patent on the medication. My corneas are drying out and I fear permanent, irreversible damage.
Hi everyone. Just wondering if anyone else has trouble with inflammed/blocked saliva glands? Any tricks to ease the pain or help it flow more easily? Trying warm compresses, gentle massage and more fluids at the moment. My GP has prescribed two rounds of antibiotics which have not cleared it this time. Obviously, as we are in lockdown, he cannot refer me to ENT yet. Might contact my rheumatologist but might be the same answer..🤷‍♀️ Thanks!
Hi everyone. I was just diagnosed today after having an advanced blood test done. I was told I had Lupus and Fibro for the last six years and just found out today it’s actually Sjogren’s and fibro. Still doing research and trying to figure out what this new correct diagnoses means. I look forward to learning from all of you.