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!
Sjogren’s Foundation Board of Directors Meeting May 2020
The Foundation operates on a fiscal year from July 1-June 30. Our Spring Sjogren’s Foundation Board of Directors Meeting in May is always a summary of the past fiscal year’s achievements and planning for the upcoming fiscal year.
Last fiscal year, we created our Vision and updated our Mission Statement. Every activity and goal is placed under one of the mission statement items so we know that we are always moving forward with these “pillars” in mind. If you aren’t familiar with our Vision and Mission statements, do take a look at my article. We even organize our Board presentations around our mission. So I will do the same in this article. Now, summarizing a year’s worth of work can be a bit long, so this post is written in a list format to get as much information across as possible. Frankly, I could write a whole post on each one of these! But let’s start with the list.
Supporting Sjogren’s Patients
Most of the Sjogren’s Foundation time and energy goes to supporting the patient. You have become quite familiar with all of the programs including Suppotty groups, our Conquering Sjogren’s Newsletter (previously Moisture Seekers), walks, team Sjogren’s, and the National Patient Conference. But this year, there are activities that really stood out!
Our New Name and New Look
Have you noticed our new name and new look? I can’t stress enough the time and attention this project required to get everything just right! Here is a list:
- Name change from Sjogren’s Syndrome Foundation to Sjogren’s Foundation. The Foundation is taking the lead internationally and making the statement that Sjogren’s is a Disease (and not a syndrome).
- Our New Logo to represent a current look and feel that incorporates our new name.
- Reprinted materials including brochures, newsletters, clinical guidelines, papers, and anything with a logo on it.
- Our New Website. This was a MAJOR undertaking to design, migrate data from old to new, and ensure all systems were linked and operating correctly. AND this was launched on time, April 1st, in the midst of the pandemic. The staff didn’t miss a beat!
New Town Hall Phone-in Meetings
We hosted two New Member Town Hall meetings and held twenty-two Zoom Town Halls during Covid-19. The Town Hall meetings during the pandemic were created quickly to support patients and they were widely attended! There are specific Covid-19 discussions as well as some helpful tips like meditation, stress relief, exercise, diet, and more. You can replay any of these calls. The staff created and launched this program in just a matter of days!
Hydroxychloriquine Shortage Scare
Steven Taylor, CEO of the foundation was on top of the hydroxychloriquine scare instantly! He immediately contacted the FDA who was very responsive in supporting Sjogren’s patients. Additionally, he spoke with the U.S. President of Novartis (one of the makers of hydroxychloriquine) and he confirmed that they were increasing production rapidly. We are truly blessed that our CEO is so well-regarded in the pharma community and at the FDA. He quickly sent out a notification to patients, rheumatologists, and the American Academy of Rheumatology when he had information pertinent to each group.
More Support Volunteers
The Foundation launched a New Member Welcome Committee. The committee is made of 13 volunteers who are available to talk with new members. Additionally, our Patient Support Volunteer program increased from 68 volunteers to 110 caring patients who volunteer to speak to newly diagnosed people. These programs receive a lot of accolades from members as they can talk with someone who really knows what it is like to have Sjogren’s.
New Conference and NPC goes Virtual
Our first 1-day conference was held in Cleveland to over 180 patients. Our National Patient Conference was postponed due to Covid-19, and now we will be holding it virtually! We are learning a lot about working virtually and we’re excited to bring the conference to people in the comfort of their own homes. Register here.
Provide Credible Resources and Education for Healthcare Professionals
The Foundation Lead the Adoption of ICD Coding
There will now be a Sjogren’s ICD Code beginning in October! This is a very big deal and a huge accomplishment. Now, your doctor can actually have a code for Sjogren’s instead of writing the closest code based on your symptoms. This will help clarify our diagnosis for insurance coverage for specialist visits and treatments.
Healthcare Professional Materials
The Foundation has a significant project outlook for creating more Clinical Practice Guidelines, and training materials for the medical professional. They have also spearheaded the publication of the 5th Edition Sjogren’s Book (due to the publisher in June) and have transitioned the Sjogren’s Quarterly newsletter to the new branding.
New Pri-Med CME Course for Primary Care Physicians
Prim-Med is an organization that produces conferences for Primary Care physicians. the Sjogren’s Foundation created and presented a CME course on Sjogren’s’ and 800 Primary Care physicians attended! This presentation is also on the Pri-Med online course website so other Primary Care physicians can take this course for another year (and receive CME credits).
Serve as the Voice for All Sjögren’s Patients
Several staff members also serve on other councils, task forces and coalitions to keep our voice at the tables that matter most to us:
- Various National Health Council Initiatives/Coalitions
- National Coalition of Autoimmune Patient Groups
- American College of Rheumatology’s Coalition for Accessible Treatments
- FNIH Biomarkers Inflammation & Immunity Steering Committee
- NIAMS, NIH coalition
- Childhood Arthritis & Rheumatology Research Alliance – CARRA
- The staff has also joined numerous COVID-19 coalitions or advisory groups to learn from other organizations and/or represent Sjögren’s.
Lead, Encourage and Fund Innovative Research
There is so much happening in the research and therapeutics areas of Sjogren’s! Not only are we seeing exciting and new research projects come to us for funding, but we have several therapeutics in clinical trials with major pharmaceuticals. Are you interested in clinical trials? Take a look at the locations and see if you qualify for participation. Additionally, there is a lot of international research happening around Sjogren’s. The Foundation not only has its finger on the pulse of all research but holds a major seat at the table!
The Foundation has also developed a strong relationship with the NIH and is invited to Advisory meetings, including:
- National Institute of Dental and Craniofacial Research (NIDCR)
- National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
- National Eye Institute (NEI)
- FDA Center for Biologics Evaluation and Research (CBER)
- FDA Center for Drug Evaluation and Research (CDER)
- NIH Autoimmune Coordinating Committee
- FDA Office of New Drugs
At the Sjogren’s Foundation Board of Directors Meeting, we also awarded research grants to two new High Impact and one new Pilot research project.
Support our initiatives by increasing and expanding our fundraising efforts
Finally, none of this is possible without fundraising. For the past several years, our Corporate Sponsorship program has grown (primarily with drug companies wanting to make sure they are speaking to Sjogren’s patients). The Foundation has also accomplished so much with our modest budget, that our personal donations from patients and loved-ones have also increased, as well as membership.
Wrapping Up My Report for the Sjogren’s Foundation Board of Directors Meeting
I hope you are as amazed as I am. And these are just the highlights of the Sjogren’s Foundation (not the list of all they do for us). They do this for you and me…the Sjogren’s Patient…in the hopes that we can live a better life. Here are some of our key staff members making it all happen for us!
- Steven Taylor, CEO, and President
- Katherine Morland Hammitt, Vice President of Medical & Scientific Affairs (and a Sjogren’s patient)
- Sheriese DeFruscio, Vice President of Marketing & Corporate Relations
- Benjamin Basloe, Vice President of Philanthropy & Office Operations
- Kathy Ivory, Director of Field Services
- Elizabeth Trocchio Bryant, Senior Director of Marketing
- Michele Champigny, Senior Director of Awareness Initiatives
- Matt Makara, MPH, Director of Research & Scientific Affairs
- Jessica Levy, Director of Fundraising
- Other supporting staff members that make the foundation so productive.
THANK YOU ALL!
If you have a moment, jot them a note of thanks! They take good care of us. If you are not a member of the Sjogren’s Foundation, please become a member! You get so much for your annual fee of $36!