Superficial Siderosis Symposium 2025: A Beacon of Hope and Collaboration
This June, the Superficial Siderosis Research Alliance (SSRA) will host the first international symposium at the historic Harvard Loeb House in Cambridge, Massachusetts. This landmark three-day event aims to unite patients, caregivers, clinicians, and researchers to improve understanding, care, and treatment for superficial siderosis—a rare and progressive neurodegenerative condition.
Opening Night Reception- June 11, 2025
The symposium will begin with a heartfelt opening night at the Loeb House in Harvard Square. The evening will feature a short program led by SSRA President Kyle Dempsey, a 15-minute video spotlighting personal stories from the SS community, and a welcoming opportunity for attendees to connect and reflect on the journey ahead.
Patient and Clinical Care Focus- June 12, 2025
The second day will centre on patient care and clinical management. Topics include symptom progression, hearing and mobility challenges, and navigating chelation therapy. Leading clinicians such as Dr. Michael Levy (Massachusetts General Hospital), Professor David Werring (Queen Square, London), and other experts will offer presentations and answer live questions from both in-person and remote attendees. Sessions will also explore caregiving, emotional health, and strategies for improving quality of life.
Q&A Panel Discussion
The live Q&A panel will take place on June 12 at 1:15 PM Eastern Time (6:15 PM British Summer Time). One of the highlights of Patient Day will be the live Q&A panel moderated by Kyle Dempsey. Remote viewers will have the opportunity to submit their questions in a private and secure format. Questions may be submitted anonymously—with no patient-identifying information—or with the option to have the submitter's name read aloud.
We welcome everyone to participate, but please remember that all questions must remain medically focused.
Research Day- June 13, 2025
The final day will feature research in areas such as diagnostic imaging, iron chelation, and future clinical trials. Clinical care experts and researchers from the United States and the United Kingdom will participate in a roundtable discussion facilitated by Michael Levy, MD, PhD, to discuss proposals promoting international collaboration and knowledge exchange. The day will close with an emphasis on identifying strategic pathways for future research initiatives.
Join From Anywhere
Closed captioning will be available in your choice of English, Spanish, French, Portuguese, Italian, Dutch, and Finnish.
All remote viewers will receive a downloadable PDF copy of the symposium program booklet. The three-day event will be recorded and uploaded to the SSRA YouTube channel. A full transcript will also be available for download at a later date.
Please be sure to register by 3:00 PM Eastern Time (8:00 PM British Summer Time) on June 11, 2025, to receive your remote access links.
A Call to Action
The SSRA Symposium 2025 is more than an academic event—it is a global gathering of hope, resilience, and advocacy. Through open dialogue, shared experiences, and scientific exchange, the symposium will empower everyone impacted by superficial siderosis to move forward with greater knowledge and united purpose.
To register for the symposium and access remote viewing links, please visit the official SSRA website at https://ssra.livingwithss.com.