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).
Sjögrens Foundation May Board Meeting — Priorities and Accomplishments
This past fiscal year (July 1-June 30) , the Foundation has had three driving priorities:
- Increase Awareness in the Public Domain. We have made great strides in increasing awareness in the public domain this year. Our diagnosis time is down to 3 years (from 6 years). We have expanded the volunteer group of Sjögrens Ambassadors, continued with awareness programs around the country, and launched more messaging and content on the website and social media than ever before. April is Sjögrens Awareness month, and I hope you saw the wonderful coverage the disease received in the news media. I am particularly proud to have participated in the US News and World Report article.
- Increase Involvement from Industry, Stakeholders, and Partners. The Foundation has engaged with the Industry and Stakeholders by expanding our Corporate Relations Program, Pharma relationships, and our Clinical Trials Consortium. The staff also serves on a variety of healthcare organizations and on advisory boards to support the Sjögrens patient. This work ensures accurate information about the disease is delivered to the industry that wants to support us (the patient).
- Increase Awareness and Education in the Healthcare Professional Sector. Healthcare Professionals received stronger education about the disease this past year with the launch of clinical practice guidelines for Ocular, Oral, and Rheumatology. In fact, the Foundation presented the Rheumatology guidelines at the ACR (American College of Rheumatology) Conference and ACR Magazine published them. Physicians in major cities received information regarding the upcoming clinical trials for Sjögrens so they can refer their patients. The SSF was also instrumental in launching a new Sjögrens program called HarmonicSS, a group focused on harmonizing international Sjogrens data.
This is just a quick list of achievements that I found particularly impressive. This work will lead to a faster diagnosis, better care, potential new therapies specifically for Sjögrens, and better international data and standards around the disease. These new achievements were in addition to the patient support programs, research reviews and monitoring, and lobbying efforts that the Foundation has always performed.
Sjögrens Foundation May Board Meeting — Success By the Numbers
- There were 1,108,927 unique visitors to Sjögrens.org website between July 1, 2016 and May 18, 2017.
- 6 Sjögren’s Research Grants were Awarded.
- The Foundation managed 63 Active Support groups.
- The largest Sjögrens April Awareness campaign in SSF history was executed.
- Staff mentored 25 international Sjögrens Patient Groups.
- The SSF completed Phase 1 and started Phase 2 of Rheumatology, Ocular, and Oral Clinical Guides.
- The SSF launched Smart Patients online community.
- The staff and physicians on the Board began creating OnLine STEP program to train clinical trial investigators.
- 500 patients attended the National Patient Conference.
- Staff managed over 700 volunteers who donate their time.
Ii is truly impressive to see how much work is accomplished by the Foundation. I am so proud to be affiliated with this organization! If you are not a member of the Sjögrens Foundation, please consider joining. The fee to join is nominal.
Together, we will conquer this serious autoimmune disease!