June 11-13, 2025 | Cambridge, MA

Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis.

*Additional speakers are pending confirmation and will be announced as details are finalized.

Event Schedule for Activities and Programs

Symposium Remote Viewing

The QR code or ticket link offers access to remote viewing links that will be emailed in the first week of June.

Request Links

Wednesday, June 11, 2025 | Welcome Reception

5:00 PM – 8:00 PM

Kick off the symposium with an evening of connection and conversation at the historic Harvard Loeb House. Enjoy a cocktail hour and a small plate buffet while mingling with patients, caregivers, medical professionals, and researchers.

Who Should Attend?
Patients, caregivers, and medical professionals. All pre-registered attendees are welcome!

Thursday, June 12, 2025 | Patient & Clinical Care Day

7:15 AM – Check-In and Packet Pickup
7:30 AM – Morning Coffee Station Opens
8:00 AM – Welcome and Opening Remarks
Alli Ward, Director of Membership, NORD (Remote)
8:10 AM – Featured Speaker
David Werring, MD, PhD, FRCP
Topic: The Role of Multidisciplinary Care in Superficial Siderosis
8:40 AM – Natallia Kharytaniuk, MB BCh MCh MRCS(ENT) MRCS(I) PhD
Topic: Audiovestibular Phenotype in Infratentorial Superficial Siderosis
9:10 AM – Break
9:25 AM – Keynote Speaker
Michael Levy, MD, PhD
Topic: Superficial Siderosis: Past, Present, and Future
9:55 AM – Wouter Schievink, MD
Topic: Surgical Solutions to Superficial Siderosis
10:25 AM – Phillip Haddad, MD, MPH, MHA
Topic: Monitoring and Managing Chelation Therapy in SS: A Hematologist’s Perspective
10:55 AM – Break & Beverage Service Begins
11:05 AM – Jakko Brouwers, MSc MCSP (Remote)
Topic: Case Study of a Patient with Superficial Siderosis
11:20 AM – Tom Hughes, MBBS FRCP MD (Remote)
Topic: Learning from an Amazing Patient
11:35 AM – Rhys Holmes
Talk: A Life Redefined: Living with Superficial Siderosis
Noon – Lunch
1:00 PM – Panel Setup / Break
1:15 PM – Panel Q&A Discussion
3:00 PM – Conclusion

A full day of discussions led by top medical experts covering clinical care and current treatment approaches. Q&A Panel Discussion – Engage with medical professionals and researchers during our interactive session.

Who Should Attend?
Patients, caregivers, and medical professionals

Open to: Patients, caregivers, and medical professionals
Request a remote viewing link

Friday, June 13, 2025 | Medical Research Day

8:00 AM – Guest Arrival & Coffee Station Open

9:00 AM – Susannah Krzyzanowski
Clinical Scientist and Clinical Project Manager, Perspectum Ltd
Topic: Iron in Mind: Unlocking Superficial Siderosis through Quantitative MRI

10:00 AM – Break & Room Reset

10:20 AM – Michael Levy, MD, PhD
Session: Research Roundtable Kickoff & Agenda Overview

10:30 AM – Morning Roundtable Session
Guided Discussion with SSRA Research Committee

Noon – Break

12:15 PM – Final Roundtable Discussions & Closing Remarks

2:00 PM – Conclusion

It is a focused day for medical professionals dedicated to ongoing and future research in superficial siderosis. Dr. Michael Levy and Professor David Werring will lead open discussions.

Who Should Attend?
Medical professionals, researchers, and clinicians

Open to: Medical professionals
Request a remote viewing link

michael levy md superficial siderosis awareness month

Michael Levy, MD, PhD

SSRA Chief Medical and Research Advisor
SSRA Medical Advisory Board

Associate Professor, Harvard Medical School

Research Director, Division of Neuroimmunology & Neuroinfectious Disease
Director, Superficial Siderosis Clinic and Research Laboratory Director, Neuroimmunology Clinic and Research Laboratory
Department of Neurology,

Massachusetts General Hospital

David Werring FRCP, PhD, FESO

SSRA Medical Advisory Board SSRA Research Group
Professor of Clinical Neurology
Head of Research, Brain Repair and Rehabilitation
UCL Queen Square Institute of Neurology
Honorary Consultant Neurologist
Comprehensive Stroke Service
National Hospital for Neurology and Neurosurgery, Queen Square
University College Hospitals NHS Foundation Trust
NIHR Senior Investigator
Programme Co-Director, MSc. / MRes / Diploma / PG Certificate in Stroke Medicine, UCL Queen Square Institute of Neurology
President, British and Irish Association of Stroke Physicians (BIASP)
Life Member, Clare Hall, University of Cambridge
London

Wouter Schievink MD

Professor of Neurosurgery, Cedars-Sinai

Director, Cerebrospinal Fluid Leak Program

Director, Microvascular Neurosurgery Program, Cedars-Sinai Hospital, Los Angeles

Spinal CSF Leak Foundation Medical Advisory Board

Philip A. Haddad, MD, MPH, MHA, MSHCI, CHES, CAHIMS, CHCQM

SSRA Medical Advisory Board
Chief of Hematology/Oncology, Associate Chief of Staff, Chief of Research, Professor of Medicine, Overton Brooks VAMC/LSUHSC-S
Shreveport

Natallia Kharytaniuk MB BCH MRCS(ENT) MRCS(I) MCH

SSRA Medical Advisory Board SSRA Research Group
Higher Specialist Trainee in Audiovestibular Medicine, Royal National ENT and Eastman Dental Hospital, University College Hospital
London