A Milestone for Our Community
A rare disease diagnosis is never easy for the person receiving it, the family absorbing it, or the doctor delivering the news. Our first instinct is always to search for answers, but for those of us living with or supporting someone with superficial siderosis, those answers are often elusive.
At the Superficial Siderosis Research Alliance (SSRA), we understand this journey intimately. We know the fear, frustration, and isolation that can follow an SS diagnosis. But more importantly, we’ve seen the strength that grows when patients and caregivers come together. Over the past six years, our community has united around a shared mission—to improve the quality of life for everyone affected by superficial siderosis. And now, we’re proud to announce the realization of a long-held dream: the first-ever Superficial Siderosis Symposium.
What started as an idea among a few dedicated advocates has become an international gathering of patients, caregivers, clinicians, and researchers. Hosted in Cambridge, Massachusetts, from June 11 to 13, 2025, the SSRA Symposium brings together world-renowned experts in clinical care and research, all focused on changing the future of superficial siderosis care.
Remote Viewing Access
We are excited to share that remote viewing links will be available for all registered guests who cannot attend in person. Our TEAMS streaming service can handle up to 10,000 viewers and will feature closed captioning in five languages! These links are being set up and emailed during the first week of June. Each day’s programming, Wednesday evening’s reception video, Thursday’s Patient Day presentations, and Friday’s Research Roundtable will be available for real-time viewing, allowing our global community to participate in this landmark event from anywhere in the world.
If you haven’t yet registered for remote access, we encourage you to visit REQUEST LINKS today. The link does say buy tickets, but be assured, there is no cost. Ensure your email is correct; we don’t want you to miss a moment.
Why This Matters
This symposium is more than a conference—it’s a declaration. For the first time, our community has gathered experts from both sides of the Atlantic, brought patients into the center of the conversation, and created a space for science, stories, and solutions to intersect. Every presentation, every handshake, and every question asked helps move the needle forward for superficial siderosis care and research.
We are deeply grateful to the speakers for donating their time and insight, our volunteers for making every detail run smoothly, and every patient, caregiver, and supporter who believes in this mission. Special thanks go to Kyle and Sue Dempsey, Deb Zindler, Randy Kohler, Vivid-Ink, Terry Hanley Audio, and The Loeb House for helping bring this event to life.
A Global Gathering in the Heart of Cambridge
Food, Fellowship, and Hospitality
While the focus of the symposium is scientific and patient-centered discussion, we know how important comfort and connection are for our attendees. Each day begins with a morning coffee station, and refreshments will be available throughout the sessions. Thursday’s lunch will be provided for those attending in person, and a buffet dinner is planned during the Wednesday reception. We’ve designed the schedule to create moments for conversation and camaraderie in between presentations and panels.
Wednesday, June 11 – Welcome Reception
We’re kicking things off with an evening cocktail reception at The Loeb House in Cambridge. This relaxed gathering will offer a chance to meet fellow attendees, enjoy conversation, and watch the premiere of a moving 15-minute video produced by our partners at Z2 Marketing, highlighting the SS community’s strength, resilience, and progress.
Thursday, June 12 – Patient Day
Thursday is entirely dedicated to patients and caregivers. From the opening remarks to the final panel Q&A, the schedule is packed with powerful presentations from leading clinicians and researchers and moving stories from individuals living with SS.
Featured Patient Day speakers include:
– Professor David Werring on the value of multidisciplinary care
– Dr. Natallia Kharytaniuk, presenting her doctoral work on hearing loss in infratentorial SS
– Michael Levy, MD, PhD, delivering the keynote: Superficial Siderosis—Past, Present, and Future
– Dr. Wouter Schievink on surgically treatable causes of SS
– Dr. Philip Haddad, discussing the safe management of chelation therapy
– Mr. Jakko Brouwers, sharing a case study on neurorehabilitation and mobility recovery
– Dr. Tom Hughes, reflecting on lessons learned from a remarkable SS patient
– Rhys Holmes, offering an inspiring personal narrative titled A Life Redefined
These presentations will be followed by a moderated Q&A panel led by SSRA President Kyle Dempsey. The panel will allow attendees and remote viewers to ask questions and hear from multiple experts in one forum.
The featured Research Day speaker is Susannah Krzyzanowski, who will present her research, “Iron in Mind: Unlocking Superficial Siderosis through Quantitative MRI.”
Friday, June 13 – Research Day
Our final day turns the spotlight on research. After morning coffee and casual conversation, we’ll hear from Susannah Krzyzanowski, a clinical scientist and SS patient, whose talk Iron in Mind explores how quantitative MRI imaging can help track disease progression. The day concludes with a research roundtable led by Dr. Levy and joined by our SSRA Medical Advisory and Research Committee members. This collaborative session aims to spark new ideas, proposals, and partnerships in SS research.
The 2025 Superficial Siderosis Symposium was organized and underwritten by the Superficial Siderosis Research Alliance, with the support of our donors. Massachusetts General Hospital- The Neuroimmunology Clinic and Research Laboratory, or any responsible parties, is not affiliated with Harvard University, nor is Massachusetts General Hospital- The Neuroimmunology Clinic and Research Laboratory a Harvard University program or activity
