Superficial Siderosis Symposium Research Roundtable
On June 13, 2025, the final morning of the Superficial Siderosis Symposium, a group of experts on superficial siderosis and audience members gathered for the research roundtable. They set out to answer a deceptively simple question: What has to happen next so we can finally slow, stop, or even prevent superficial siderosis (SS)?
Over two intense hours, the group discussion transitioned from raw epidemiology to cutting-edge imaging, debated spinal fluid biomarkers, explored iron-handling genes, and sketched the outlines of the first genuinely global treatment agenda.
The Superficial Siderosis Experts
Roundtable Panelists: Michael Levy, MD, PhD, Neuroimmunology Clinic Director, Massachusetts General Hospital, Professor David Werring, Ph.D., FRCP, FMedSci, Professor of Clinical Neurology, UCL Queen Square Institute of Neurology, Dr. Natallia Kharytunik Phd Resident Doctor, Royal National ENT and Eastman Dental Hospitals, Philip A. Haddad, MD, MPH, MHA, MSHCI, Professor of Medicine, LSUHSC-S/Feist-Weiller Cancer Center, Wouter Schievink, MD, Professor of Neurosurgery, Cedars-Sinai Medical Center, Alex Cavarjal Gonzalez, MD, PhD, Clinical Fellow in Neurology, Massachusetts General Hospital, Susannah Krzyzanowski, Clinical Scientist Perspectum LTD.
Hi Katy. My husband Mike was diagnosed with SS IN 2020. We live in Denver, CO, and we’re referred to a neurologist who would not even see Mike. We experienced the same with the additional two neurologist referrals. We made the trip to Boston to see Dr. Michael Levy, who has expertise on SS and who is a neuro immunologist. This was during the onset of Covid, and he was able to work with us remotely for a time but as Covid outbreaks slowed down, the virtual appointments across the states were no longer possible. We then went to Mayo for a workup and they were great, but unable to address the source of Mike’s bleed due to surgical risk outweighing the benefit.
About 2 years ago, we found a neuro immunologist at the University of Colorado who was willing to take Mike as a patient. His name is Dr. Andrew Wolf.
You might reach out to neuro immunologists in your area. Hopefully you won’t have to travel but it is a possibility. If you are near a med school with an associated university hospital that does research, you might start there. If you are near Denver, CO by chance, I can send more info about Dr. Wolf.
It’s tough having a rare condition like SS, but the Living with SS website has helped us in knowing we are not alone.
Sorry for lack of brevity. Hope you have some luck finding a neurologist who well versed and/or is willing and curious to gain the expertise you need. I might also recommend an initial trip to Boston to see Dr. Michael Levy. He is an excellent place to start and may be able to see you in a shorter time frame(i.e., weeks instead of months.)
Take good care,
Melissa Yacullo
Hello,
I was just diagnosed with SS a week or so ago and have had difficulty finding a neurologist who is familiar with it. Also am having to wait two months for an appointment with no attempt to identify whether or not there is a current bleed. I’ve had multiple head/neck traumas in the past and also have a “tangle of veins) in my neck. Just trying to get ahead of this process. Currently suffering from one sided hearing loss and minor headaches. MRI identified issue. Any guidance would be appreciated.