Living With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research I stumbled across, and the day-to-day triumphs that made a challenging diagnosis feel a little less lonely. Eleven years later, that notebook has evolved into a fully digital magazine, helped establish a patient registry, become part of an international nonprofit, and (I hope) serve as a lasting record of what’s possible when people refuse to give up on each other.
Over the years, we have added layer after layer of resources:
- The Patient Section: quick paths to “Types of SS,” “Symptoms,” “After Your Diagnosis,” and an ever-growing global Physician Directory.
- Steps for Help: an action-oriented primer that walks newly diagnosed families through imaging, bleed repair, and finding a specialist who will listen.
- Professional pages that unpack pathophysiology, clinical features, and current trials in a language that neurologists appreciate, but caregivers can still follow.
- A searchable post archive of symptom guides: hearing lossOverview In approximately 95% of superficial siderosis patie... More, balance, cognition, bowel and bladder, fatigueOverview The brain plays a crucial role in regulating sleep ... More, and more; each one trimmed with evidence-based coping strategies.
- And, of course, a steady stream of personal stories that remind us why science matters in the first place.
Last year, I wrote that I would no longer share the intimate details of Gary’s progression—our family needed a little privacy for the next chapter (https://livingwithss.com/a-decade-of-strength-garys-journey-with-superficial-siderosis/). The decision felt right, but it left me wondering who might carry the editorial torch when it was finally time to step back. Today, I have my answer, and it is a joy to put her name on the masthead.
Welcoming Rachel Kenner
Rachel Kenner is a Texas native who chased her journalism dreams to New York City and the halls of NYU. She was 23, full of plans, and on track for a writing career when a cluster of puzzling neurological symptoms knocked her sideways. A year of appointments, scans, and second opinions ended in the diagnosis none of us had heard of until it walked through our front doors: superficial siderosis.
For many, Living With Superficial Siderosis can feel isolating, but it’s crucial to remember that there is a community ready to support you.
Most people would have taken a long pause. Rachel chose a different verb—write. Her first essay for Living with Superficial Siderosis, “Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise,” mapped the raw territory between fear and determination with the voice of someone who refuses to let either feeling win for long (https://livingwithss.com/intervention-at-only-23-what-may-sound-scary-is-a-blessing-in-disguise/).
Rachel’s second act begins this fall when she enters the Columbia University Postbac Premed Program—a pivot inspired, in her words, by “the peculiar way life works for us and watches out for us.” She plans to transition from the world of literature into the world of medicine and to channel every lesson directly back to the community that helped her achieve this goal.
Passing the Mantle (and Everything in the Inbox)
Effective today, Rachel joins us as Editor of Living With Superficial Siderosis and Social Media Director for the Superficial Siderosis Research Alliance. In practice, that means:
- Shaping future features, interviews, and Q&A panels.
- Expanding our Best Life and Education sections with fresh perspectives on navigating early-stage SS while finishing college and starting careers.
- Working to translate research updates into plain-language social snippets.
- Serving as the first point of contact for patient stories—because nothing beats hearing you’re not alone from someone who was diagnosed only last year.
As Rachel’s journey unfolds, she’ll share insights on Living With Superficial Siderosis that reflect her unique perspective. Just as necessary, she will carry on the painstaking editorial standards you have trusted since 2014: rigorously sourced content, clear conflict-of-interest disclosures, and a voice that never confuses optimism with wishful thinking.
Why This Matters
Rachel’s role as Editor of Living With Superficial Siderosis will help bridge the gap between patients and medical professionals. When I launched the site, Gary and I were desperate for road signs. Now, Living With Superficial Siderosis is itself a signpost; a place where newcomers can land, take a breath, and click through a menu built by people who have walked every detour the diagnosis throws at you. That menu will stay put. The difference is that Rachel’s generation will start adding its directions.
A Personal Note of Gratitude
Handing over stewardship of my work is equal parts exhilarating and bittersweet. It was exciting because I knew Rachel would push this platform further than I ever could; bittersweet because every post I wrote was a love letter to one remarkable husband and the community that rose around him. Yet if the past decade has taught me anything, it is that good stories don’t end; they invite the next voice to step in and keep the narrative moving forward.
So please join me in welcoming Rachel, bookmarking her byline, and cheering her on as she balances spine MRIs with organic chemistry labs. The SSRA board and I have complete confidence that her curiosity, rigor, and plainspoken warmth will serve every patient, caregiver, and clinician who lands on our pages.
Here’s to new chapters, to fresh eyes on old questions, and to a community that keeps showing up for each other.
Originally published on ssra.livingwithss.com June 22, 2025; reposted here with permission
