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…
Sjögren’s Foundation Vision, Mission, and Mission Pillars
At the beginning of the year, the Foundation adopted a new Vision statement and updated our Mission statement. I’ve summarized the statements here, but you can also read my full article.
The Sjogren’s Foundation Vision Statement is:
To create a community where patients, healthcare professionals and researchers come together to conquer the complexities of Sjögren’s.
The updated Mission Statement for the Sjogren’s Foundation is to:
- Support Sjögren’s patients and their loved ones through education, resources, and services;
- Provide credible resources and education for healthcare professionals;
- Serve as the voice for all Sjögren’s patients through advocacy and awareness initiatives;
- Encourage and fund innovative research projects to better understand, diagnose and treat Sjögren’s.
Every project, goal, and work-product that the Foundation produces is built on our mission and vision. In fact, we assign all activities under our five “Mission Pillars” above.
Supporting Sjögrens Patients is Key!
Even though we have our five Mission Pillars, everything we do at the Foundation really does support the patient! If you are a member of the Foundation (and if not, go here), you are kept informed of all that is being accomplished. And it is A LOT!
I am proud of everything that the Foundation accomplishes, however, I list my favorite accomplishments for the 2019 calendar year below. These key items, I believe, will have a huge impact on the Foundation and patient community in the future.
Name Change to Sjögren’s Foundation.
If you read my blog, you know that I dropped the “syndrome” long ago. We have a disease, not a syndrome! The Foundation agrees and voted for the name change last year, and we just announced the official name change this month. Next year, you will see this name change, and other changes to support the transition! The Foundation is leading on dropping “syndrome” and since the Foundation is respected internationally, I hope this will inspire others to do the same.
Foundation Recognized as a Leader.
The Foundation staff has participated in and presented at numerous key events and conferences this year. The key list includes:
- National Institutes of Health (NIH),
- US FDA,
- ACR (American College of Rheumatology,
- National Health Council (for which Steven Taylor, our CEO, is Chair of the Board), and the
- American Association of Dental Research.
Additionally, the Foundation is a key collaborator on four international research teams to help find consistent Sjogren’s bio-markers. the Foundation keeps “Sjögren’s” active in the minds of critical organizations that impact the patient.
Clinical Practice Guidelines.
These are guidelines for physicians that focus on specific medical concerns of Sjögren’s patients. These documents are available for patients and to download and bring to your doctor, and for doctors to use. Completing these is an extremely difficult process. It takes many medical professionals to define, collaborate, and agree upon the best diagnosis and treatment. WE have completed three critical Clinical Practice Guidelines. Next up are the Clinical Practice Guidelines for pulmonary complications, central nervous system involvement, peripheral nervous system involvement, lymphoma, and vasculitis. Most noteworthy: the Sjögren’s Foundation is the only health organization to have created clinical practice guidelines. These guidelines have been reviewed and accepted by the ACR (American College of Rheumatology).
Greater Funds for Research Grants.
This past year we also revamped the research grant program to offer two grants: the High Impact Grant at $75,000 and the Pilot Research Grant at $25,000. We had a significant response to this new program! The increased funds for the High Impact Grant made it possible for Sjogren’s to attract larger research projects. This year we have some very interesting research on children and how Sjogren’s shows up in the younger patient. This research may prove to help in diagnosing Sjogren’s early. The earlier the diagnosis, the better the treatment before the more severe symptoms evolve. Now that I know how Sjögren’s shows up in children, I know that I’ve had Sjögren’s since about age 8. Can any of you track early symptoms of swollen glands, vaginal yeast infections, recurring sinusitis, fatigue?
Boston Pri-Med CE Program.
In early December the Foundation presented at the primary care conference for continuing education credits (Pri-Med). The program educated PCPs on Sjögren’s and treatments. Our own Theresa Lawrence Ford, MD (and Sjogren’s Rheumie extraordinaire) created and delivered a session to 800 PCPs! The Foundation booth was inundated with doctors gathering more information and exclaiming it was the best session of the conference. The Foundation will be investigating how we can continue to develop this program and expand to other Pri-Med markets. As you all know, it is difficult to find doctors knowledgable about Sjögren’s. This is another avenue for healthcare professional education since the rheumatologist discipline is not attracting enough people to meet future demand.
Clinical Trials and New Therapeutics
Although we do not have a Sjögren’s medication or biologic on the market, there are many pharma companies in development and one coming into Clinical Trial Phase 3. This is amazing progress and we hope to see a new therapeutic designed specifically for Sjogren’s patients in the next 5 years.
Sjögren’s Foundation Staff and Board Physicians
The Sjögren’s Foundation December 2019 Board meeting included all of the people who make the Foundation work.
First, let’s talk about the power of the staff. The Foundation is lead by Steven Taylor (CEO and President). He is a man with a singular focus, a long vision, and a tireless work ethic. He leads the staff of 13 with clarity and empathy. Steve accomplishes more than most leaders I have met in my career. In another post, I will highlight the amazing staff members; they are dedicated to the Foundation and work hard for the patients!
Second, I’d like to highlight the Board members. The Foundation Board is comprised of patients, caregivers, physicians, and researchers. The Board is 100% volunteer. Although everyone is important on the Board, I want to highlight the physicians that give so much of their time! Our Board physicians write articles and review clinical guidelines. They give presentations to educate other Physicians. They write books, and they support the Foundation when called upon. Furthermore, this is in addition to their jobs (as Rheumatologists, Opthamalogists, Oral Medicine, etc.). The hours they spend offering to help educate other medical professionals and supporting the patient is truly remarkable.
Every Board meeting I thank the staff and other Board members, on behalf of myself and all patients! But the Sjögren’s Foundation December 2019 Board meeting was so impactful, that when I thanked them, I cried.