Tomorrow, July 23rd, is World Sjögren’s Day. World Sjögren’s Day was established by the Sjögren’s Syndrome Foundation more than a decade ago to commemorate Dr. Henrik Sjögren (the man who discovered our disease). It’s a day when we can put a face on the millions of people living with this disease and gives those touched by Sjögren’s a vehicle to educate others and have their voices heard.(more…)
Today, I want to share the new Sjogren’s Foundation Vision statement and highlight the changes to the Mission statement.
As you may know, I am the current Chair of the Board of the Sjogren’s Foundation and a patient living with Sjogren’s disease. It is a privilege to represent the patient voice, and an honor to work alongside the amazing staff and other board members who fight for “us” daily. We worked hard to create the new mission and vision statements that speak volumes in a handful of words. Together, the statements are incredibly powerful and will embolden the Board of Directors and Staff of the Sjogrens Foundation to achieve even more for us — the patient.(more…)
Last Friday and Saturday I was in Virginia at the Sjögrens Foundation May board meeting. The Board of Directors comes together for our live meetings every May and December (with conference calls throughout the year). The Board is comprised of healthcare professionals in a variety of disciplines (Rheumies, Ocular, Oral, Researchers), a disability attorney, caregivers of patients, and patients. The amazing staff of the Foundation joins for much of our meeting to present achievements and challenges and to discuss goals.
The 2017 spring meeting was particularly rewarding and I’m honored to be a member of the Board representing patients! In fact, it was so impressive that I want to share what the foundation has accomplished for us (the patient).
I am thrilled that the Sjogrens Syndrome Foundation has asked me to be the keynote speaker at the 2017 Sjogrens National Patient Conference. I spoke during the Awards dinner at the Seattle conference last year, and I am honored to speak again to our East Coast Sjogrens peeps.
Are you attending the event? The conference is March 31st-April 1st in the Philadelphia/Cherry Hill area. I’d also like your input…
I am pleased to be speaking at this year’s National Patient Conference produced by the Sjögren’s Syndrome Foundation. My keynote address will be Friday April 8, 2016 at 6:00pm. I hope you will join us, along with 400 or so other Sjögrens patients, to learn more about our Autoimmune disease and how we can live our best lives.
My speech is titled:
My Sjögrens Life
Relapse to Reinvention — Navigating the Changing Stages of Living with an Autoimmune Disease.
I will also post parts of the speech on this site, just in case you miss it. But I hope to see you at the Sjögrens National Patient Conference 2016!
May 2015, the Sjögrens Foundation ran an article of mine in the newsletter The Moisture Seekers. Here are some of the tips I presented that may give you some ideas about managing your Sjögrens.
I embrace my disease – not fight it!
Instead of imagining an internal army kicking the sh** out of Sjögrens (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjogrens to calm it down was what finally did the trick.