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

SSF Valentine's Day Giveaway!

Posted on Sun, Feb 14, 2016

 

SSF_Valentines_Day_Giveaway

To celebrate the season of love, the SSF wants to Sjö how much we appreciate you by giving away three complimentary registrations to the 2016 SSF National Patient Conference "The Sjögren’s Journey!" 

How to Enter:
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2016. The Foundation will privately email the three winners. Winners will be picked at random and the registrations are only transferable through family members, which means your family can comment below to give you an extra chance at winning! Please email us at info@sjogrens.org with any questions. 

2016 National Patient Conference
"The Sjögren’s Journey"
April 8-9, 2016

Hilton Seattle Airport & Conference Center 
17620 International Boulevard,
Seattle, Washington
April 8-9, 2016

 
Presentation topics will include:
  • Sjögren's Overview
  • Dry Skin & Dermatological Issues
  • Oral & Ocular Manifestations of Sjögren's
  • Examining Sjögren's - Case by Case
  • Tips for Your Sjögren's Journey
  • Gynecological Issues with Sjögren's
  • An Inside Look at Sjögren's and Gluten-Free Diets
  • Sjögren's - Where are we in Drug Development?

Click Here to View the 2016 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: Sjogren's, National Patient Conference

What the SSF Means to Me

Posted on Mon, Dec 28, 2015

 by, Elizabeth Chase 
 
Elizabeth_Chase_2The Sjögren’s Foundation (SSF) has really been an incredible resource for me. I was diagnosed 5 years ago at age 24 and felt very confused. I had heard of Lupus as my best friend has it, but had no clue about any other autoimmune diseases. When I first searched the word Sjögren’s, the foundation came up. I immediately consumed everything they had to offer and became a member. I then found the Boston support group, and started fundraising for them online. 

When I attended my first SSF National Patient Conference in 2013 I met my life line - the Foundation's Under 40 with Sjögren’s Group Support Group. They are my go-to for everyday questions and are a great support system. Thanks to the Foundation, I have been able to share information about Sjögren’s with my doctors and family. Recently, I've participated in an SSF Walkabout, organized my parents retirement parties as Sjögren’s fundraisers and helped kick off the Boston Sip for Sjögren’s event!

I'm very grateful for the support I have found with the Foundation and the information and resources it has provided me with. This is why I support the SSF! 

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member
 
ssf_logoThe SSF was founded by a patient, for patients and the Foundation will never lose that focus. It is because of your generous support that the SSF continues to soar to new heights on our journey to transform a future of hope for all Sjögren’s patients!

So on behalf of the SSF and our volunteer Board of Directors, I want to thank each of you for sharing your story, attending our events, volunteering your time and donating to our programs. Without you, we would not be able to share the amazing successes that we were able to achieve in 2015 and build on this momentum in the New Year. 
 
Wishing you and your family a Healthy and Happy New Year!
 
Sincerely,
Steve_Sig
 Steven Taylor
Chief Executive Officer 
Donate to Research
 
We encourage you to comment below & share what the SSF means to you. 

Topics: Depression, Sjogren's, coping with sjogren's, National Patient Conference

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,

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Steven Taylor
Chief Executive Officer

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

Is Vaseline Safe for Nasal Dryness?

Posted on Mon, Nov 04, 2013

WindWith winter weather exacerbating many Sjögren’s symptoms, including nasal dryness, the Sjögren’s Syndrome Foundation has been receiving a lot of questions about the use of Vaseline to relieve the pain associated with dryness of the nose and sinuses. 

Below is a Question & Answer on this topic and how inhaling Vaseline, when used to sooth nasal dryness, can affect the lungs. This was taken from a past SSF National Patient Conference talk "Lung Complications & Sjögren’s," by Richard Meehan, MD, FACP, FACR.

Q. I’ve been putting Vaseline inside my nose. I’ve read recently that the grease can get in your lungs and cause a special type of pneumonia. So, is this something that you shouldn’t put in your nose?

A. Well, our ENT physicians don’t like Vaseline. They recommend that people frequent the use of nasal spray, that puts the normal saline back in the nostril. Some of them like to use a little bit of olive oil, but generally it's thought that Vaseline is toxic to the lungs if you inhale it.

- Dr. Meehan

CD

Lung Complications & Sjögren’s by Dr. Meehan

Chief of Rheumatology and Professor of Medicine at National Jewish Health in Denver, Colorado. Dr. Meehan also is Co-Director of the Autoimmune Lung Center at National Jewish Health and a specialist in autoimmune diseases and rheumatoid conditions affecting the lungs.

Lung complications are sometimes the most misunderstood and life-threatening manifestations of Sjögren’s. Dr. Meehan will add to your understanding of the various pulmonary complications and leave you with knowledge to share with your own physician. The audio is taken directly from a talk given at our National Patient Conference.

Member Price: $16
Non-Member Price: $30
(You must be logged in to to purchase at Member Price. Double check you are receiving the correct price before finalizing your purchase.)

Each talk is 30-40 minutes long, includes the Question & Answer at the end of each talk, and comes with the handouts used by the presenter. 

 

Click Here to Purchase Aduio CD

Topics: Dry Nose, Sinuses, Pulmonary manifestation, Sjogren's, National Patient Conference

Get all the Vital Sjogren's Information on an Audio CD!

Posted on Wed, May 29, 2013

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Missed the 2013 National Patient Conference? Get all the vital information you need on an audio CD!

Five of our most popular talks from the 2013 National Patient Conference held in Bethesda, MD are available for purchase as audio CDs.  Each talk is 30-40 minutes long and comes with the handouts used by the presenter. Buy just the talks you want to hear or purchase the whole set!

 

Click Here to Purchase Aduio CD
Price:
$16 for Members
$30 for Non-members
Click here to learn about SSF membership!

Remember, if you order online you must sign in first to receive the Member discount. If you have any questions about your login information or want to order the CDs over the phone, please call the Foundation at 1-800-475-6473.

Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, National Patient Conference

We LOVE our Friends!

Posted on Thu, Feb 14, 2013

HappyValentinesDayLetters

Today the SSF wants to Sjö you how much we appreciate all the support by giving away complimentary registrations to two people for the 2013 SSF National Patient Conference "Discover the Possibilities" April 12-13, 2013 at the Hyatt Regency Bethesda!

Due to the overwhelming amount of interest, we have decided to giveaway 3 Free Conference Registrations.

Congratulations to our winners: Donna, Mary & Shawn. The winners have all been notified personally by the SSF and thank you all for the support!

Entering is easy! (this givaway is now closed)

To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2013. The Foundation will privately email the two winners on February 15, 2013. Winners will be picked at random and the registrations are non transferable. Please email us at tms@sjogrens.org with any questions.

Conference Details:
Hyatt Regency Bethesda
One Bethesda Metro Center
Bethesda, Maryland 20814

   describe the imagePresentation topics will include:

  Overview of Sjögren’s Syndrome
  Sex and Living with Sjögren’s
  Biologic Therapies and Sjögren’s
  Understanding Blood Changes and Test Results
  Caregiver/Patient Perspective on Sjögren’s
  Neurological Complications and Sjögren’s
  Dry Eye and Sjögren’s
  Dry Mouth and Sjögren’s
  Podiatry Issues and Sjögren’s
  Hope for the Future: Research Update

Click Here to Purchase Aduio CD

 

Topics: Sjogren's, National Patient Conference

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