News

16th Annual International Symposium for Sjögren’s Disease (ISSjD)

efitzgerald@sjogrens.org — Mon, 22 Apr 2024 14:35:44 +0000

16th Annual International Symposium for Sjögren’s Disease (ISSjD) Liz Mon, 04/22/2024 - 10:35am

This week, the Sjögren’s Foundation will attend the 16^th annual International Symposium for Sjögren’s Disease (ISSjD) in Amsterdam, Holland. ISSjD will host world renowned experts and is themed “Looking Forward”, which will focus on new research, diagnostic tools, and cross-disciplinary collaboration.

This is the first year that the conference has changed its name from the International Symposium for Sjögren’s Syndrome (ISSS) to ISSjD, reflecting that Sjögren’s is also recognized internationally as a serious and systemic disease.

The conference will open with a special presentation on “Aligning Patient and Clinician Perspectives” presented by Kathy Hammitt, MA, VP of Scientific and Medical Affairs at the Sjögren’s Foundation and Alan Baer, MD, Chair of the Medical and Science Advisory Board at the Sjögren’s Foundation and Director of Jerome Greene Sjogren's Syndrome Clinic at John’s Hopkins University. This presentation will discuss the different perspectives patients and clinicians have on the priorities of a treatment plan. It also addresses types of questions the patient and clinician should ask each other to ensure the treatment plan is appropriate from both perspectives and helps the patient receive the best care.

The Foundation is also giving five different presentations: one oral talk and four poster presentations. We partnered with prominent Sjögren’s experts to help present this information. The oral talk will focus on our newest clinical practice guidelines for the Peripheral Nervous System (PNS) and the posters will discuss the following topics: Postural Orthostatic Syndrome (POTS) and Sjögren’s, Respiratory Manifestations in Sjögren’s, Rheumatology and Neurology Nomenclature, and our 40^th year timeline to highlight the progress made in Sjögren’s. These presentations will provide information on various topics in Sjögren’s to the medical and research community as well as initiate discussions about these topics in Sjögren’s.

We look forward to the wealth of knowledge that will be shared with the international Sjögren’s medical and research community and cannot wait to share this information with you as well!

April is Sjögren's Awarenss Month!

efitzgerald@sjogrens.org — Mon, 01 Apr 2024 15:40:10 +0000

April is Sjögren's Awarenss Month! Liz Mon, 04/01/2024 - 11:40am

April is Sjögren’s Awareness Month! Sjögren’s is one of the most prevalent autoimmune diseases, affecting an estimated 4 million Americans. In our #ThisIsSjögrens online campaign, we are featuring 30 real patients to show the diversity and impact of this complex disease. Every patient has a unique and powerful story to share, and it is the collection of your experiences that portrays this disease.

We encourage you to follow our April campaign and remember that every day is an opportunity to start a conversation about Sjögren’s and how it affects you.

Click Here to Read More

Action Alert! Oral Health Initiatives in Sjögren's

kcox@sjogrens.org — Fri, 22 Mar 2024 18:42:36 +0000

Action Alert! Oral Health Initiatives in Sjögren's Kristie Fri, 03/22/2024 - 2:42pm

World Oral Health Day was March 20th and in honor of this day, we would like to share the Foundation’s advocacy initiatives for oral health in Sjögren’s. We'd also like to call you to action! Please call your Congressperson and ask them to sign the Congressman Morelle letter to CMS regarding dental coverage for individuals with autoimmune diseases.

Click here to read more!

Congressman Morelle Introduces Sjögren’s Resolution to the U.S. House of Representatives

kcox@sjogrens.org — Wed, 20 Mar 2024 21:06:41 +0000

Congressman Morelle Introduces Sjögren’s Resolution to the U.S. House of Representatives Kristie Wed, 03/20/2024 - 5:06pm

We are excited to announce that the Foundation met with Congressman Joe Morelle of New York on Capitol Hill on March 19th, 2024 to celebrate the Representative’s introduction of the Sjögren's Foundation's Resolution to the U.S. House of Representatives reaffirming April as Sjögren’s Awareness Month.

This Resolution provides updated information about Sjögren’s disease, as our knowledge has advanced considerably since a Resolution was first introduced in 1998. The emphasis of the Resolution was on Sjögren’s as a serious and systemic autoimmune disease and furthering ongoing federal research. The Resolution will serve as a reference for lawmakers and the public on Sjögren’s disease, raising awareness and supporting efforts with future funding and programmatic requests. Here is the official entry of the Resolution in Congress.gov. The full resolution will be available to read on this site in a couple of days.

Advocacy doesn’t just happen overnight. This was a year-long endeavor to find a representative to highlight this disease and take the lead introducing the Resolution to share the latest information on Sjögren's across Congress and key federal agencies.

We would like to thank Congressman Morelle for his leadership in raising awareness for Sjögren's disease. Join us in thanking Congressman Morelle for his support. You can comment on the Sjögren’s entry on his official Facebook page here or you can call his office at 202-225-3615 and leave a message thanking him for raising awareness for Sjögren's.

The Foundation is working on an exciting number of initiatives before Congress and the Administration, and will continue to push for ways to raise awareness for Sjögren's and fight to let Sjögren’s voices be heard.

From left to right: Kathy Hammitt, VP of Medical and Scientific Affairs, Sjögren's Foundation; Congressman Joe Morelle of New York, U.S. House of Representatives; Janet Church, CEO and President, Sjögren's Foundation; Matt Makara, Sr. Director of Scientific and Research Affairs, Sjögren's Foundation

Awareness Never Looked So Good - 40th Anniversary April Awareness Kit Available - Limited Supply!

efitzgerald@sjogrens.org — Tue, 19 Mar 2024 14:07:07 +0000

Awareness Never Looked So Good - 40th Anniversary April Awareness Kit Available - Limited Supply! Liz Tue, 03/19/2024 - 10:07am

Awareness never looked so good - Limited Edition April Awareness Kit

Help bring greater awareness to Sjögren’s during April, the official Sjögren’s Awareness Month, by purchasing this limited-edition kit. This kit is designed to inform your community about Sjögren’s wherever you go! Whether you are shopping for groceries, or driving about town, you will bring awareness to those you encounter. The brochures and flyers will also help you have conversations with family, friends, and doctors, so they can better understand the disease that patients live with every day.

The April 2024 Awareness Kit includes:

New Sjögren’s Foundation Shopper Tote
New Sjögren’s Foundation Pen
New Sjögren’s Foundation Car Magnet
Sjögren’s Foundation Awareness T-shirt
3-brochures: “What is Sjögren's”, “Dry Eye”, “Dry Mouth“
The “This is Sjögren's” Flyer
New 40^th Anniversary Timeline with Major Milestones in Sjögren's
New 40^th Anniversary Bookmark

These kits are available in March and April and supplies are limited. Kits will begin shippin March 17^th!

Click Here to Order

The 2024 Spring Walk for Sjögren's have been announced and are open for registration!

efitzgerald@sjogrens.org — Mon, 18 Mar 2024 16:32:07 +0000

The 2024 Spring Walk for Sjögren's have been announced and are open for registration! Liz Mon, 03/18/2024 - 12:32pm

The 2024 Spring Walks for Sjögren's have been announced and are open for registration!

Walk for Sjögren’s is a national awareness and fundraising program that takes place across the United States. The family-friendly event focuses on providing awareness and education of Sjögren’s within the local community while helping to raise crucial funds to support research and education. Walks raise vital Sjögren's awareness and crucial funds to support education and research efforts. This year, we are also commemorating 40 years of Sjögren’s progress with our special walk theme: Conquering Sjögren’s, One Step at a Time!

The event also provides the opportunity for patients to connect with other patients and for family and friends to learn more about Sjögren’s. The Walk for Sjögren's is also a celebration of the fundraising accomplishments of our teams and individuals and an invaluable way to address the seriousness of Sjögren's.

Each Virtual Event begins with a Zoom Kick-Off Ceremony that includes Door Prizes, an Ask the Expert Panel and much more. Then after the ceremony, step off that day at 10:45am for your own walk in your neighborhood or anywhere where you want, whether you walk at home, on your treadmill, in your neighborhood or at your favorite park!

Upcoming Events

Mid-Atlantic & National Walk for Sjögren's (DC, MD, VA, WV & Nationwide)
April 13, 2024
Click Here to Register

Philadelphia Tri-State Walk for Sjögren's - LIVE EVENT
May 11, 2024
Click Here to Register

Midwest Walk for Sjögren's (IA, IL, IN, MI, MN, WI) - LIVE EVENT
June 1, 2024
Click Here to Register

Colorado Walk for Sjögren's
June 22, 2024
Click Here to Register

Past Events

Southeast Walk for Sjögren's (FL, GA, NC, SC)
March 16, 2024
Click Here to Donate

Southwest Walk for Sjögren's (AZ, NM, UT)
March 16, 2024
Click Here to Donate

We hope to 'see' you soon!

For more information about the Walk for Sjögren's Click Here

For more information about Spring Events Click Here

New Blog! Celebrating Autoimmune Awareness Month 2024

kcox@sjogrens.org — Mon, 18 Mar 2024 16:07:48 +0000

New Blog! Celebrating Autoimmune Awareness Month 2024 Kristie Mon, 03/18/2024 - 12:07pm

March is Autoimmune Awareness Month, and we are celebrating the tremendous strides taking place in autoimmune awareness and within the autoimmune research community!

Click here to read more

Share Your Story for April Awareness Month 2024!

efitzgerald@sjogrens.org — Sun, 10 Mar 2024 01:45:43 +0000

Share Your Story for April Awareness Month 2024! Liz Sat, 03/09/2024 - 8:45pm

Help us Celebrate 40 years and Share your Story with the Foundation's 2024 #ThisIsSjögrens Campaign!

The Sjögren's Foundation began with the sharing of stories, and now, 40 years later, we are still working to keep the spirit of national awareness alive with our #ThisIsSjögrens campaign.

#ThisIsSjögrens was created to highlight you and share the stories of real patients. Every patient has a unique and powerful story to share, and it is the collection of your experiences that portrays this complex disease. We not only want to raise awareness of Sjögren’s, but also come together to connect “patient to patient” and share how patients are effectively coping with the disease and offer advice for others.

Every day in April, we will highlight a different patient and show a glimpse into their life with Sjögren's. This year, we will also use this campaign to give a unique "patient to patient" viewpoint and dive deeper into various Sjögren's topics with advice directly from other patients. We hope these stories will help create a better understanding of this complex disease and let all patients know that there is support through this community.

Please help us celebrate 40 years by filling out the form below and sharing your story! 30 stories will be featured in this year's April campaign, and all stories submitted are eligible to be featured by the Foundation.

Thank you for sharing your story to help shine a light on the diversity of the millions of patients living with Sjögren's.

Click Here to Share Your Story

New Patient-to-Patient Story: Joint Pain & Fatigue, Kali's Story

efitzgerald@sjogrens.org — Fri, 01 Mar 2024 17:19:36 +0000

New Patient-to-Patient Story: Joint Pain & Fatigue, Kali's Story Liz Fri, 03/01/2024 - 12:19pm

The first Friday of every month, the Foundation will share a new Patient-to-Patient story. We encourage you to go to our Patient-to-Patient page, where you can read other patient's stories.

Click Here for our Patient-to-Patient Stories

If you would like to be featured in one of our Patient to Patient stories, click here to share your Sjögren's story!

New Blog! The Foundation Recognizes Rare Disease Day 2024

kcox@sjogrens.org — Thu, 29 Feb 2024 20:29:48 +0000

New Blog! The Foundation Recognizes Rare Disease Day 2024 Kristie Thu, 02/29/2024 - 3:29pm

Today, the Sjögren’s Foundation recognizes patients with rare diseases and their representative health organizations as we celebrate Rare Disease Day, which is held on the rarest day of the year— February 29^th (and February 28^th, during non-leap years). Since we are celebrating, you may be asking yourself “Is Sjögren’s a rare disease?”

Click here to read more