Change Is Here. Be Part Of The Change.

by Rebecca Lobo January 9, 2026

When life gets challenging, when we’re faced with injustice and unspeakable cruelty, it’s easy to lose hope and be so immobilized by despair and fear that change seems impossible. But, as my journey with Sjogren’s has taught me, hope is the first step towards change. Change happens when enough people hope for and want something badly enough to start doing something about it. The collective actions of ordinary people result in extraordinary change.

Below are some of the ways you and I accomplished change in 2025. Thank you.

Sjogren’s Advocate - Raising awareness of and advocating for Sjogren’s

As Sjogren’s Advocate (www.sjogrensadvocate.com) has grown in readership, I’ve watched the community band together and support one another in our efforts to advocate for change.

While Sjogren’s Advocate initially was founded to help patients advocate for timely diagnosis and care, in 2025 Sjogren’s Advocate gained the attention of the clinicians, researchers, health education and biotech companies who are actively shaping the future of Sjogren’s care. Because of Dr. Sarah Schafer, MD, who meticulously gathers and synthesizes data and information on Sjogren’s disease, our readers, who donate to my GoFundMe campaign to keep Sjogren’s Advocate online and visible, and those who share the website and respond to our calls to action, we influenced Sjogren’s care at the highest levels in 2025.

Virtual Sjogren’s Summit - Networking and advocacy in the Sjogren’s community

Last year, Dr. Kara Wada, MD, an immunologist and member of T he Hidden Illness and Disability Directory of Entrepreneurs and Nurturers (HIDDEN ), asked me to present my experiences on networking and advocacy in the Sjogren’s community at her V irtual Sjogren’s Summi t.

My talk inspired a fellow attendee to create the Instagram account, @S jogrensSocialClu b, dedicated to raising awareness of and advocating for Sjogren’s by sharing factually accurate information about the disease and n ot grifting her fellow patient s. Follow, like, and share her posts. It’s an easy way to contribute to change.

Novartis - Asking for research and care that acknowledges the realities of Sjogren’s

On April 13, 2025, I published, “T he American College of Rheumatology, Sjogren’s Disease Experts, and Medical Educators Need to Step U p”. Many of you left comments on the article, and I regularly shared and continue to share those with doctors and researchers when advocating for Sjogren’s.

This month, Cristina Montoya, a registered dietitian, patient advocate, and member of HIDDEN, will be meeting with Novartis, who is developing a drug for Sjogren’s. She will be sharing my article and the comments on the article with Novartis. So, if you have Sjogren’s disease and haven’t done so already, please read the article and leave a comment. This is your opportunity to share your experience about getting care for Sjogren’s and voice your opinion on the kinds of care you’d like to have for Sjogren’s.

Outcome Measures in Rheumatology (OMERACT) - Influencing research on Sjogren’s

Medical education begins with research on Sjogren’s; what doctors and health insurance companies are taught about a disease directly impacts the availability and quality of care patients receive.

Sjogren’s disease continues to be mischaracterized as a mild, dryness syndrome simply because of how it’s studied and, therefore, taught. The original misunderstanding of Sjogren’s as merely a benign syndrome limited to dryness still remains deeply entrenched in the medical community.

When conducting clinical research, standardized definitions called classification criteria are used to ensure that only people who definitely have the condition being studied are included. This is problematic for an invisible illness like Sjogren’s, where many of the manifestations of the disease are not easily observable or even measurable. Worse, people with Sjogren’s are forced to hide their symptoms to function in society. Worse yet, when patients drop their masks and share their symptoms with researchers and clinicians, their symptoms frequently are dismissed as just dryness, psychologized as anxiety and depression, or ignored outright. As a consequence, misdiagnoses drive the classification criteria for Sjogren’s to be heavily weighted towards dryness, the most visible and easily quantifiable aspects of the disease. This all reinforces the misconception that Sjogren’s is mostly dryness leaving patients without quality healthcare.

What started as data has become dogma. Because of these misdiagnoses, the 2016 classification criteria exclude 20-40% of people with Sjogren’s. So, studies based on these criteria reflect only a subset of the population and a portion of the disease. This is problematic because clinical research informs medical education, which, in turn, affects the availability and quality of medical care you receive from your doctor, and, crucially, whether your health insurance will cover it.

OMERACT is a global, volunteer-driven non-profit organization committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.

I joined OMERACT in 2023 and in 2025 I was invited to join the Sjogren’s Disease Working Group. As a scientist and a Sjogren’s patient, volunteering with OMERACT feeds my passion for research and ensures that I have a say in how future clinical studies of Sjogren’s are designed and implemented. Inclusive clinical studies designed to accurately capture the realities of Sjogren’s disease translate into better care and treatments for Sjogren’s.

If you’re passionate about research and want to influence how various rheumatological diseases, including Sjogren’s disease, are studied, sign up to volunteer with OMERACT.

Skin Care For Sjogren’s - Feed your skin from the outside in

The Sjogren’s Society of Canada invited me to speak at their annual National Patient Conference in April 2025. My presentation was titled, “Sjogren’s Disease, Nutrition, and the Gut-Skin Connection”. Click here to watch it.

HIDDEN, The Empower Network - Supporting chronically ill and disabled entrepreneurs

In the US, approximately 60% of adults live with a chronic illness that could progress to a disability, and more than 22 million adults already live with a disability.

People with disabilities are often self-employed because they can no longer work a traditional job, and those on public support are not typically allowed to accrue savings. Owning a business can provide a safety net.

However, there’s a lack of support and resources for the 1.8 million disabled entrepreneurs in the country. Programs like the Office of Disability Employment Policy claim to “support self-employment and entrepreneurship among individuals with disabilities”, but when a disabled person attempts to find resources, they’re provided a generic link to sign up with a SCORE mentor who is unlikely to understand disability, an article that ignores the challenges of being self-employed with a disability, or generic advice like “be sure to network” without addressing the barriers to networking while disabled.

Some of the barriers to accessing existing resources and support that disabled entrepreneurs encounter include loud environments, inaccessible venues, risk of infection, fast-paced content, and exclusionary practices. Illness flare-ups, hospitalizations, fatigue, and other challenges make consistency almost impossible, which often disqualifies small business owners from loans, grants, investors, and accelerator programs.

I founded HIDDEN in 2024 to improve the visibility of and support for disabled entrepreneurs. Five entrepreneurs joined HIDDEN in 2025.

Towards the end of 2025, I discovered T he Empower Networ k (www.empower-network.org), a 501(c)(3) non-profit community supporting professionals and entrepreneurs navigating work alongside chronic illness or disability. The Empower Network defines community as, “anyone who has been pushed out of or excluded from traditional work due to chronic illness, disability, or similar barriers”. They provide connection, education, and peer support through accessible, inclusive programs designed to help people thrive at a sustainable pace (webinars, community art therapy events, highlights and storytelling, and weekly coffee hours).

I’m excited to announce that I’ve joined the Board of Directors and we’re working to find a way to incorporate HIDDEN into The Empower Network. Please support this new non-profit by becoming a member, volunteering, and/or donating.