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

Thank You For a Year of Hope!

Posted on Thu, Dec 29, 2016

Dear Friends,

With the New Year approaching, we at the Sjögren's Syndrome Foundation (SSF) are proud of all that has been accomplished in the past year for Sjögren's patients. We want to share with you a few of the highlights from 2016 that were made possible by your support!

2016 highlights.jpg

CLINICAL PRACTICE GUIDELINES

CPGs.pngThe SSF has brought together clinical leaders and Sjögren’s experts in all areas of care to produce and publish the very first Clinical Practice Guidelines for Sjögren’s. These guidelines will help doctors and dentists in various disciplines to provide appropriate care to Sjögren’s patients and will ensure that patients receive the best treatment possible. There are currently three (3) different Guidelines that have been completed and published and they are:

  • Systemic Manifestations in Sjögren’s Patients
  • Oral Management: Caries Prevention in Sjögren’s
  • Ocular Management in Sjögren’s Patients

DRUG DEVELOPMENT

research.pngIn 2016, the SSF continued our lead in getting new therapies developed to help treat Sjögren’s. In the history of Sjögren's, there has never been so much interest in developing a therapeutic for Sjögren’s. There are currently nine companies that have shown an interest in developing a therapeutic for Sjögren’s. Each of these companies are looking to enter or have entered clinical trials in Sjögren’s. The SSF is actively engaged with these companies, as well as the U.S. Food & Drug Administration and other regulatory agencies, to ensure that the patient voice is captured throughout the entire drug development pipeline. This includes discussions concerning what patients want from a therapeutic to discussions about clinical trial design.

EDUCATION & AWARENESS

Anna Lopypnski .pngThe SSF continued to expand our awareness and education campaigns throughout 2016 with the goal to not only increase awareness about the disease but also encourage healthcare providers to become more educated about Sjögren’s and its numerous complications. The ways in which this was done included adding to our patient resources; introducing new educational opportunities for patients; continuing to support, train and grow the Awareness Ambassador program; hosting more than 175 support group meetings around the country and offering a superior National Patient Conference.


 

Anna Lopynski Quote .pngTHANK YOU!

We at the SSF are grateful for all your support and what you have helped us achieve this past year, but we are most proud of each and every Sjögren's patient as they inspire and amaze us in their fight against this disease.

As 2017 quickly approaches, we know you have many options when it comes to your year-end giving. That is why we would be extremely grateful if you were to help us reach our goal of raising $12,000 by 12 midnight on December 31st by making a donation today to the Sjögren's Syndrome Foundation.

Your gift will provide critical funds to further our research, education and awareness efforts as well as help make a difference in the lives of all Sjögren's patients. We are truly thankful for every gift we receive.

Together, we can transform the future of Sjögren’s!

Make a Donation Now

Topics: Sjogren's, Research, Clinical Trials, Clinical Practice Guidelines

Proud to be Your New Chairman!

Posted on Mon, Sep 26, 2016

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I am honored to be the new Chair of the Sjögren’s Syndrome Foundation’s (SSF) National Board of Directors. Having served on the Board for the past five years, I have seen first-hand the incredible work being done by the SSF and the impact the Foundation has made on the lives of those living with Sjögren's.

As a practicing optometrist for thirty years, I have had the pleasure of holding leadership positions in numerous community and professional eye care organizations. With all this experience, I can confidently say that there is something truly different about the SSF. The CEO, Steven Taylor, has built an organization in which the volunteer board and the professional staff work together in an efficient and cooperative way. He has engaged hundreds of volunteers from across the country to help increase awareness, raise funds, lead events and promote the work of the SSF. He has established a Board that is made up of a combination of patients, family members of patients, doctors, along with others who have an interest in the disease. The SSF staff never treats their work as a job, but rather as a calling to make a difference in the lives of those struggling with this devastating disease.

The SSF works in many areas to ensure that no stone goes unturned and that every program and project is evaluated with the patient in mind! The SSF has a strong advocacy and research arm that is working with pharmaceutical companies to develop a therapeutic for Sjögren’s. Recently, the SSF held an introductory meeting with the FDA to help launch an ongoing dialogue about clinical trials for new therapeutics in Sjögren’s. In addition to this work, the SSF also has brought together professional leaders in all areas of care to produce and publish the first-ever Sjögren’s clinical practice guidelines that doctors can now use as a roadmap for how to appropriately care for Sjögren’s patients. And our strong focus on educating patients and their families can be seen by our annual national patient conference and our more than 65 patient support groups in the United States.

As Board Chair, I am honored to be representing all Sjögren’s patients. I am truly proud to be a part of this outstanding organization and hope you’ll join with me by supporting the SSF. TOGETHER, we can continue our momentum and improve the quality of life for all those who suffer with Sjögren’s!

SSF_Board.png


Click Here to  Become an SSF Member

Topics: Dry Eyes, Sjogren's, Advocacy, Research, Clinical Trials

Announcing SSF's 2015/2016 Research Grantees

Posted on Sun, Jan 31, 2016

SSF_Research_2016It is because of your generous support that the SSF is able fund talented researchers and expand the Foundation's research program. We strive to foster research that will have the greatest potential impact on Sjögren's patients, ensuring new therapeutics are developed and a cure is found. 

The SSF research program is designed to reward exceptional research efforts and encourage investigators to continue their focus on Sjögren's throughout their careers. Many of our researchers' work has led to larger grants by other institutes to continue their work and new Sjögren's breakthroughs!  

The Foundation is proud of the work we fund and would like to share with you the five new 2015-2016 SSF Research Grant Recipients and the 2015 SSF Outstanding Abstract Awardee:

Marit Hoeyberg Aure, PhD     
Postdoctoral fellow 
Center for Oral Biology
University of Rochester
Cell lineage analysis in lacrimal gland maintenance and repair
Download Abstract

Alan Nathaniel Baer, MD
Associate Professor of Medicine
Department of Medicine (Rheumatology)
John Hopkins University School of Medicine
Comprehensive analysis of antibodies in Sjögren’s using phage immunoprecipitation sequencing
Download Abstract

Maria C. Edman, PhD
Research Associate
Department of Pharmacology and Pharmaceutical Sciences 
University of Southern California, School of Pharmacy
Tear fluid and serum levels of Cathepsin S and its endogenous inhibitor Cystatin C as biomarkers for Sjögren’s 
Download Abstract

Markus Hardt, PhD
Assistant Member of the Staff
Department of Applied Oral Sciences
The Forsyth Institute
Identification of proteolytic profiles diagnostic of Sjögren’s
Download Abstract 

Petros Papagerakis, DDS, PhD
Assistant Professor of Dentistry
Orthodontics & Pediatric Dentistry
Clinical Significance of Circadian Rhythms Disruption in Sjögren’s Pathogenesis
Download Abstract 


 

The SSF Outstanding Abstract Award is designed for the Foundation to recognize excellence in research by new and/or young investigators who present outstanding abstracts on Sjögren’s research at professional meetings.SSF_Blog_Research_picture-1.jpg

Awardeed at the 2015 American College of Rheumatology Scientific Meeting

Erlin A. Haacke, MD
University Medical Center Groningen (UMCG), The Netherlands

Abstract: Salivary Gland FcRL4+ B-Cells Are a Potential Source of Progenitor Cells for MALT Lymphoma in Primary Sjögren's Syndrome   Download Abstract

Click here to learn more about the SSF Research Program

Topics: Sjogren's, Research

The TIME is NOW – SSF Plans for 2016

Posted on Mon, Jan 11, 2016


ssf_logo

Happy New Year! 

As many of you know, the Sjögren’s Syndrome Foundation (SSF) has been methodically working towards making the lives of Sjögren’s patients better! Thanks to the dedication of our Board of Directors, our staff and hundreds of volunteers, the SSF has been actively working on our overall strategic plan to make Sjögren’s a household name, increase treatment options for Sjögren’s while also helping to educate healthcare professionals on how to treat and manage Sjögren’s.   

Last year was a banner year for the SSF but 2016 is already proving to be even more exciting! There is still a lot of work to be done, but we know with the help of you, our volunteers and our staff, we are going to see great strides in many areas for Sjögren’s.

The time is now and here are just some of our plans for 2016:

  • Continue to expand the SSF’s Clinical Trials Consortium (CTC) and encourage the development of therapies for Sjögren’s. The SSF’s CTC works alongside companies that have compounds/ molecules currently under review for clinical trials in Sjögren’s. We help these companies better understand the disease, our patient community and encourage them to develop a treatment. In 2016, we plan to see more than 10 clinical trials started for a Sjögren’s therapeutic that will treat the entire disease, not just one symptom! This work of our CTC has been years in the making and we are most excited about how a therapeutic will be a game changer for Sjögren’s!
  • Expand our focus of educating all healthcare providers about the severity of Sjögren’s and its numerous manifestations by attending professional conferences, speaking to healthcare organizations and utilizing the SSF’s Awareness Ambassadors to expand our reach into physicians’ offices by educating them about the SSF and our resources.
  • Work alongside the FDA to help them understand the need for Sjögren’s therapeutic and educate them about the severity of Sjögren’s.
  • Fund new and innovative research that will lead to new biomarkers, diagnostic tools and learning what causes Sjögren’s through the SSF Research Grant Program. The SSF also will work with young investigators to encourage and recognize their work, in hopes that they pursue a career in Sjögren’s.
  • Continue the peer review process for our Clinical Practice Guidelines on the systemic manifestations of Sjögren’s. Our committee of rheumatologists will continue to focus on writing recommendations for how to treat and manage the 16 systemic manifestations that we identified need guidelines. These include fatigue, joint pain, lymphoma, internal organ involvement, etc.
  • Conduct a comprehensive national patient survey to gather crucial information about the numerous complications patients experience as well as the burden of the illness and their quality of life. The SSF is partnering with Harris Polling, a division of Nielson, to develop this survey with plans of distribution in late February. The findings of our survey will help the SSF, as we represent the patient voice and advocate for all Sjögren’s suffers.
  • Further our support of patients, family and caregivers through our website, patient materials, monthly patient newsletter as well as new resources we are developing for 2016.

 And in the few short days of 2016, the SSF has already seen two major accomplishments:

So as you can see, the time is now and the SSF has big plans for 2016! The progress the SSF continues to make and the recent advancements in Sjögren's research and awareness speaks to the combined efforts of hundreds of volunteers. It is because of their willingness to share their story, attend our events, volunteer their time, donate to the SSF, we are helping to create a future of hope for all patients and their families. s_taylor_headshot-1copy-1

It will take an army to achieve our plans for 2016, so I hope you will consider stepping up and getting involved! The Time Is Now!   

Sincerely,

Steve_Sig
Steven Taylor,
SSF Chief Executive Officer

Click Here to Learn More Ways to Connect with the SSF!

Topics: Treatment, Advocacy, Research, 50in5: Breakthrough Goal, Clinical Trials

Looking to the Future: Sjögren's & the SSF in 2015

Posted on Mon, Dec 29, 2014

describe the imageDear Friend,

Thank you for your continued support of the Sjögren's Syndrome Foundation (SSF) and our work to better the lives of those who suffer from Sjögren’s. 

We are excited about the progress we continue to make and the recent advancements in Sjögren's research and awareness speaks to the continuous efforts of the SSF, our Board of Directors, Medical and Scientific Advisors, Awareness Ambassadors and the hundreds of volunteers throughout the country. But the greatest impact is being made by YOU! It is your support that has made our achievements over the past year possible. We are truly grateful for your part in our growth and success.

The SSF continues to work hard to impact the lives of those with Sjögren's and in the upcoming year, the SSF plans to: 

  • Encourage pharmaceutical companies to develop new therapeutics for Sjögren’s
  • Assist in getting new Sjögren’s drugs to market by working with the FDA
  • Encourage, support and fund innovative Sjögren’s research
  • Continue our work on the SSF Clinical Patient Guidelines for Sjögren’s 
  • Support the development and use of new diagnostics for Sjögren’s
  • Expand our focus in educating all healthcare providers about the severity of Sjögren’s and its numerous manifestations
  • Further support patients, family and caregivers

Each year, we continue to fight to maintain our hard-won achievements and will make even greater strides forward in the upcoming year. I hope you will renew your support with a year-end gift to the SSF, and give what you can to support our efforts to create a better future for all patients living with this debilitating disease.

Wishing you and your family a wonderful holiday season!

Donate to Research

Sincerely,

describe the image
Steven Taylor,
SSF Chief Executive Officer

 

Topics: Sjogren's, Research, 50in5: Breakthrough Goal

Support Sjogren's This Holiday Season

Posted on Thu, Dec 26, 2013

As with any year-end non-profit donation, the age-old questions still exist - “where do my donations go?” and “what impact will they make?”  As CEO of the Sjögren's Syndrome Foundation (SSF), I take great pride in being able to answer those questions by sharing with you the many accomplishments that have been achieved by the SSF thanks to the generosity of our donors. 

s taylor headshot

This year, I am excited that we have, once again, seen amazing progress made in the fight against Sjögren’s.  Just this past month, as you may have heard, Oklahoma Medical Research Foundation completed the first genome-wide study of Sjögren’s where six Sjögren’s genes were identified.  This is the first-time that potential genes have been connected to Sjögren’s and surely gives hope for future researchers to investigate causes, progressions and treatments at the Sjögren’s genetic level. Most exciting, is that this research was completed by two SSF Research Grantees, Dr. Kathy Moser Sivils and Dr. Christopher Lessard.  Their research grants were funded by your generous contributions to the SSF and, once again, show that your donations are having a direct impact on Sjögren’s research and, specifically, this big breakthrough in Sjögren's.

That is why I appeal to you today to renew your support with a generous tax-deductible year-end gift.  Your support will allow the SSF to continue funding life-changing Sjögren’s research while also helping to further the SSF’s efforts to better the lives of those living with Sjögren's.

I also am proud to share a few additional milestones achieved this past year thanks to your support.  The SSF:                                            

  • Awarded six (6) Innovative Research Grants and three (3) Student Fellowships.
  • Continued work on the first ever Clinical Practice Guidelines for how to treat, manage and monitor Sjögren's by receiving support from the American College of Rheumatology, American Dental Association and American Journal of Ophthalmology to present a draft for endorsement and publication.
  • Held our annual National Patient Conference in Bethesda, Maryland with over 450 attendees and presentations from the country’s leading Sjögren's experts.
  • Assisted with the Restoring Access to Medication Act (S. 1647), bipartisan legislation, recently introduced to the Senate in November 2013.  This work was the continuation of my testifying before the House Committee on Ways and Means about the expense and difficulty with treating Sjögren’s with over-the-counter medication.
  • Increased our awareness efforts by adding 130 Awareness Ambassadors (now 463 nationwide) who volunteer their time to increase Sjögren's awareness in local communities across the United States.

These are just a few of the things we accomplished in 2013 and, as you can see, your donations truly are impacting our efforts and the lives of Sjögren's patients. We are truly grateful to have such dedicated members, volunteers, event participants and donors that serve as the driving force behind all we do.  I ask you to consider making a year-end gift so we can continue our efforts for all Sjögren’s patients in 2014 and beyond. Thank you in advance for your support and generosity and I wish you and your family a happy and healthy New Year.

Donate to Research

With sincere appreciation,

 describe the image

Steven Taylor
Chief Executive Officer

Topics: Advocacy, Consumer Healthcare Products Association, Research, Venus Williams, 50in5: Breakthrough Goal, National Patient Conference

RESEARCH BREAKTHROUGH: From SSF Grantees

Posted on Mon, Oct 21, 2013

Moser 2

The Sjögren’s Syndrome Foundation is excited to share that with the completion of the first genome-wide study of Sjögren’s, six new genes have been identified. Although this is only the very first step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions and treatments at the disease’s genetic level.

This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researches led by scientists at the Oklahoma Medical Research Foundation, OMRF, include two SSF Research Grantees: Dr. Kathy Sivils (Moser), 2011 SSF Research Grant Recipient, and Dr. Christopher Lessard, 2013 SSF Research Grant Recipient.

I can’t begin to explain how much of a difference the SSF grant made to this work. And this is just a milestone in the beginning of our journey to understand the genetic causes of Sjögren’s. I know it’s a long way off, but I hope these discoveries will open the door for researchers to find therapeutics that work at the genetic level to stop the disease,” said Dr. Sivils.

Lessard 2

“This is a first step. Now that we’ve identified these genes, we can dig down and start to understand how these genetic variants alter normal functions of the immune system,” added Dr. Lessard.

This study required 2,000 patients samples that were collected world-wide and tested against 7,000 healthy samples. One of the main difficulties with Sjögren’s research, is collecting the patient samples because there’s not one 100% conclusive test for diagnosing Sjögren’s, which is why the SSF has focused on funding research specifically on novel diagnostics.

It’s because of your generous support that the SSF is able to award grants to talented researchers like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research."I am proud that we were able to provide support for this groundbreaking research and look forward to future Sjögren’s breakthroughs,” said Steven Taylor, SSF CEO.

The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice Guidelines and our 5-Year Breakthrough GoalWe hope you will consider donating to the SSF Research Program and help us create a future filled with hope for all Sjögren’s patients and their families. 

Donate to Research

***This work appears in the journal Nature Genetics

Topics: Sjogren's, Research, 50in5: Breakthrough Goal

Pulmonary Manifestations and Sjogren’s Pulmonary Clinics

Posted on Thu, Jun 27, 2013

Many people are surprised to realize that Sjögren’s ("SHOW-grins") is the second most prevalentdescribe the image autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. While 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, which is why the Foundation launched our 5-Year Breakthrough goal in 2012: "To shorten the time to diagnose Sjögren’s by 50% in 5 Years."

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 eye, dry mouth, fatigue and joint pain, but Sjögren’s can affect any body organ or system. Interstitial lung disease is the most common pulmonary manifestation in Sjögren’s, but pulmonary hypertension, amyloidosis, cystic lung disease and MALT lymphoma can also occur in the lungs. Few studies have been done in pulmonary manifestations of Sjögren’s, and few pulmonary experts who are also knowledgeable about Sjögren’s have been available to patients. 

To change this, the Sjögren’s Syndrome Foundation is now partnering with The LAM Foundation to create Sjögren’s Pulmonary Clinics. We applaud their vision of creating these clinics to improve the care and treatment of patients. Our hope is that these clinics will provide our patients with expert specialized care and lead to an expanded interest in pulmonary manifestations in Sjögren’s and future studies that will increase our knowledge and improve future care in this field.

26 Pulmonary Clinics included in the LAM Network that will be expanded to become Sjögren’s Pulmonary Clinics.

Click Here to view Pulmonary Clinics

The Sjögren’s Syndrome Foundation is pleased to partner with the LAM clinics in this important endeavor. 


Topics: Pulmonary manifestation, Sjogren's, Research, 50in5: Breakthrough Goal

Announcing the 2012-2013 SSF Research Grant Recipients

Posted on Wed, Oct 31, 2012

The SSF is proud of the work it funds and would like to announce the 2012-2013 Research Grant Recipients with everyone.

Click Here to view the 2012-2013 SSF Research Grant Recipients.

For almost 20 years, the Sjögren's Syndrome Foundation has been the premiere organization in Sjögren's research funding. Promoting innovative research that will have the greatest impact on the lives of those who have this prevalent and devastating disease. Currently the SSF funds more than $275,000 a year for research projects, marking a 250% increase in funds over the last five years. 

The SSF is focused on many research initiatives to fulfill our mission including: the development of Clinical Practice Guidelines, the launching of a Clinical Trials Consortium, advocacy among federal research entities, and through the SSF Research Grants Program!

The SSF recognizes that we cannot make major progress until we find a more definitive and easier way to diagnose Sjögren’s. Better diagnostics is an important part of the Foundation’s 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

Click Here to learn more about these talented researchers’ projects and read their abstracts.

Thank you for your support!

 

Donate to Research

Topics: Sjogren's, Research

Sjögren’s Research: A Promising Future

Posted on Mon, Mar 12, 2012

Applications for the Sjögren’s Syndrome Foundation’s 2012 Research Grants are in, and the news is great!

We are thrilled to announce that the number of applications has nearly doubled from last year and the quality of candidates with exciting and creative proposals exceeds all previous years.

Having so many researches take an interest in starting or continuing their careers in Sjögren’s gives hope to finding more treatment options and a cure, but also signifies the increased value that the medical community is finding in conducting Sjögren’s research.

Thanks to the generosity of our members, supporters and corporate partners, we are able to continue to expand our research program, but we wish we could fund all of the promising applicants.  It is always difficult to turn away a talented researcher due to funds since our hope is to encourage them in pursuing a career in Sjögren’s research.     

These talented applicants are the reason we continue to increase the number of awareness events and fundraising activities to carry out our mission of not only educating and creating awareness of Sjögren’s but also encouraging vital research of this debilitating disease.  

Applications are currently being reviewed by the SSF Research Review Committee, composed of experts in Sjögren’s, and the awardees will be announced later this spring. The challenge this year – is that we are going to have to turn away more applicants than ever before!  Turning away the chance of having a worthwhile Sjögren’s project not researched!

In the meantime, please take a moment to read about the 2011 Research Grantees and their abstracts or view the upcoming SSF Events Calendar to see how you can participate.

We also hope you will consider donating to our research campaign. With more donations for research – we will be able to fund more research this year.  Please help!

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Topics: Research

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