Lately, I have been writing a lot about the Sjogren’s Foundation and programs that are being created for patients. As Board Chair, I love to share my experiences and knowledge with you, and the pandemic has heightened my need to communicate. Today, I am asking you to complete the Sjogren’s Foundation Survey on Sjogren’s and Hudroxychloriquine use (and use of other anti-malarial drugs to treat Sjogren’s). Whether you currently take anti-malarial drugs or not, and if you reside in the US, please do take the survey! It will help patients enormously!
In this article, I talk more about the need for information on Sjogren’s and Hydroxychloroquine, and I offer a few other thoughts on why I write. Soon, I will be writing more about some of the challenges we face as patients, and some ideas to help us live a productive and meaningful life. But lately, and until the National Patient Conference is completed, the Sjogren’s Foundation is top of mind!
This is a quick post to get you excited about the Virtual 2020 Sjogren’s National Patient Conference! I’m excited to emcee and present and I hope to “see” you there!
If you are a member of the Sjogren’s Foundation, you already know that the 2020 National Patient Conference was rescheduled for June 26-27th from April. And you also know that the conference has now become a VIRTUAL conference! This is an amazing opportunity for all Sjogren’s patients to receive updated and new information about Sjogren’s. This is also an opportunity for non-members to learn as much as you can about Sjogren’s.
Although I am very sad to miss the LIVE conference, I think it is pretty amazing that the Foundation has created a new way for patients to congregate and get as much information as we can about our disease. It’s also a great way to get ideas on how to live a better life with our disease. Although it is truly inspiring to be in a room with 450 other people who know exactly what it’s like to live with Sjogren’s, I might be even more excited that many more patients can attend a virtual conference.
It’s the end of May. And every May I have the pleasure of sharing what happened at the Spring Sjogren’s Foundation Board of Directors meeting. Being Chair of the Board of this amazing foundation is one of my favorite jobs ever. It is an honor to be a patient voice on the Board and it is a privilege to work with such exceptional people who work tirelessly for Sjogren’s patients. The all-volunteer Board is a group of amazing people — patients, doctors, and other voices. But it’s the staff of the Foundation that makes the organization shine so brightly. And this past year has been a stellar year on all fronts.
Now, you might think that the Sjogren’s Foundation, like many other organizations and non-profits, took a blow when the pandemic hit in the U.S.causing the year to have a downturn. But the Foundation was on a track to have it’s best year ever and then the took decisive action when the pandemic hit. They not only communicated to us whether we were immuno-compromised (or not) to better assess our risks, but they also created new and outstanding programs so that we could feel supported during a scary time! This really did highlight what our CEO, Steve Taylor often says, “everything we do, we keep the patient first”.
I have been on the Board for seven years and have been the Board Chair for two years. Never have I been more proud of the Foundation and our staff than I am today. In this post, I will review some of the big achievements of the past year and I think you will be proud too!
As Sjogren’s patients and caregivers of patients, you are likely very aware of what is happening with Covid-19. Hopefully, you have been reading the announcements put forth by the Foundation describing precautions to take and understanding if your immune system is compromised from medications. As Chair of the Board of the Sjogren’s Foundation, I just wanted to share some basic information as well as share what we are doing about events on our schedule. While you are taking personal precautions, the Sjogren’s Foundation supports social distancing as a key step in slowing the spread of this pandemic.
Here is the consolidated information on event changes and precautions for Covid/19 from the Sjogren’s Foundation.
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…)
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…)