Connecting with Sjogren’s Patients for Ideas

Connecting with Sjogren’s Patients for Ideas

As a Sjogren’s patient who writes a blog and is very involved with the Sjogren’s Foundation, I get asked a lot of questions. But since I also have a full-time job and other commitments, I am not able to answer everyone’s questions and support other patients on a daily basis. Recently, I was asked about hair loss. This is a common issue with some of the drugs we take to control Sjogren’s, and it can really impact self-confidence. Because I am unable to answer everyone’s questions, I am writing this blog to tell you how you can connect with other patients to share ideas. This post is dedicated to my reader who asked for support on hair loss! She had the right idea — connecting with Sjogren’s patients is how we can learn to live well with chronic disease!

(more…)

Sjögren’s Foundation December 2019 Board Meeting Report

Sjögren’s Foundation December 2019 Board Meeting Report

As many of you know, I am the Chair of the Board of Directors for the Sjögren’s Foundation. It is my greatest honor and pleasure to serve as Chair and to participate as one of the patient voices on the Board. It is also my favorite thing that I do! I feel like my truest self at our Board meetings — understood as a patient, viewed as a reasonable leader, and accepted for who I am as a whole person. And I love the people. The Sjögren’s Foundation December 2019 Board meeting was no exception.

This year’s winter Board meeting was especially fulfilling because of what has been accomplished this past calendar year! And I’m excited to tell you all about it…

(more…)
World Sjögren’s Day: An Opportunity to Share

World Sjögren’s Day: An Opportunity to Share

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…)
Exploring Sjögren’s — The YouTube Channel

Exploring Sjögren’s — The YouTube Channel

The Sjögren’s Foundation has produced a video series on Sjögren’s disease called Exploring Sjögren’s. If you have not seen the YouTube channel, Exploring Sjögren’s, you really must take a look! The channel is the brainchild of Steve Taylor, Sjögren’s Foundation CEO and Brad Lemack, a fellow patient, great guy, and artist’s agent. In other words, Brad knows a thing or two about making videos! This past Fall/Winter the planning and footage was shot and post-production followed. Take a look …

(more…)
Why I Love the New Sjogren’s Foundation Vision Statement!

Why I Love the New Sjogren’s Foundation Vision Statement!

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…)

Pin It on Pinterest