Patient Registry

The Pathway To Healing

What if research could identify a way to give your body a fighting chance? Kick-start the path to healing?

Ataxia, sensorineural hearing loss, and myelopathy are the real enemies you confront because of superficial siderosis. Yes, free iron wreaks havoc, but this mix of symptoms will rob you of your independence and your well-being. The cellular level damage creeps along annoyingly slowly for many years until you realize, “What’s happening with my body? To my life?”

The goal of surgery is straightforward. To stop active bleeding from creating a heavier or more widespread iron build-up, Newly diagnosed patients are often confused by the chelation process. Will it make the symptoms better? Will it make me better? The purpose of chelation is to remove the iron and stop your cell damage from progressing. It won’t address the harm already done. In theory, if you remove the build-up, you can slow or arrest the deterioration. Maybe, then, your cells have a chance to begin the healing process.

Harnessing the power of our patient registry

The dream of patient-powered research was the seed that became our Superficial Siderosis Patient Registry. A global superficial siderosis patient registry where we can overcome the geographic distance between us to collect data and offer everyone the chance to participate in new studies as they become available. At the same time, all studies need a researcher, funding, and, more importantly, data.

The time to begin is now.

We are still searching for grant money so a natural history study on superficial siderosis can be completed. The knowledge of a rare disease or condition’s natural history is a vital step in laying the foundation for a successful clinical development program. That’s especially true when developing or discovering drugs to treat rare diseases that are not understood. A natural history study would track the course of superficial siderosis as it progresses naturally if left untreated. Dr. Michael Levy has agreed to oversee this research, and when the time comes, we will need to reach out to those who have chosen to allow the natural progression.

A funding source is also required to initiate the one-year randomized, double-masked placebo control study of the efficacy of Ferriprox (Deferiprone).

Where we start

Our first registry effort was the creation of The Superficial Siderosis Research Tissue Donation Project. This project is vital to the future of superficial siderosis. Research takes a very long time, so as hard as it may be, even though some of our community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real chance to live a better life.

Kyle Dempsey has spearheaded the fundraising effort in the United States, and Rhys Holmes will soon lead a team from the United Kingdom to work their magic. We recognize that not everyone can help financially, but we are looking for project volunteers. The most generous gift you can make is an end-of-life brain and spinal cord tissue donation for superficial siderosis research. It’s not a happy place, contemplating your mortality, but we need ten volunteers at a minimum who will consent to this donation so steps may be put in place ahead of time.  

You can help in Dr. Levy’s quest to find answers. By improving the understanding of superficial siderosis and its pathophysiology, research will be able to explain the functional changes at a cellular level that are occurring within an individual due to superficial siderosis. By exposing the hows and whys, we can empower researchers to discover better treatments and, ultimately, a pathway to healing.

We realize there will be some cost involved with a donation of this type, so we are committed to raising funds so your family will not have to shoulder the burden of an added expense. All fixed slides and records for tissue donations will be stored under the supervision of Dr. Levy and his team. Donors will be released to your family after the procedure is complete and will not interfere with internment plans. All tissue volunteers can access an information packet on the patient registry website.

All registered patients will receive two annual survey updates to complete via the registry email list. Spinal cord and brain injuries tell us our bodies can be very resilient. We have a long way to go, but baby steps begin every journey.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,


  1. This is so sensitively written and this work so vital – thank you for your efforts. Any help you need, please let us know.

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