Research being done in the field of superficial siderosis and chelation therapies.
What a Year! 2022 Summary
0 Rhys Holmes December 31, 2022 January 4, 2023 7 Advocacy Education Networking Personal Stories Rare Disease Superficial Siderosis Webinars
Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be more patients diagnosed with superficial siderosis. My neurologist told me that… Read More... "What a Year! 2022 Summary"
A Rare Reunion
0 Rhys Holmes December 28, 2022 December 28, 2022 7 Advocacy Education Networking News Personal Stories Rare Disease Research
From Tweetup to Meetup It had been over three years since I'd first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and… Read More... "A Rare Reunion"
1 Rhys Holmes May 23, 2021 September 2, 2021 11 Personal Stories Research
Waking up for the Big Day I woke up to a bad headache, probably a bit of nerves and excitement about going to the best hearing institution in the United Kingdom. After all, I'm a musician and what's the fun… Read More... "Research Day"
Is Neuroprotection The Answer?
0 Rori Daniel November 21, 2020 November 22, 2020 4 Research
Can The Progression Of Superficial Siderosis Be Slowed? The holy grail of any rare disorder is discovering the cure. With Superficial Siderosis, so far, chelation therapy has offered the only solution for removing the iron. Where does this leave a… Read More... "Is Neuroprotection The Answer?"
One More Family
5 Living With Superficial Siderosis May 8, 2020 September 2, 2021 6 Brain Project
Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from each other. It doesn't matter that we've never met because, along the way, it began to feel like we know each other. Still, no matter how our group has grown these past years, there will always be one more diagnosis, and one more family learning someone they love has superficial siderosis. Read More... "One More Family"
The Superficial Siderosis Patient Registry
2 Living With Superficial Siderosis March 26, 2020 September 2, 2021 5 Patient Registry
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful engagement with researchers. A patient-powered registry (PPR) or patient-powered research network (PPRN) empowers individuals to contribute to translational science in meaningful ways. Read More... "The Superficial Siderosis Patient Registry"
The Pathway To Healing
4 Rori Daniel March 27, 2019 September 2, 2021 6 Patient Registry
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; These are the real enemies you confront because of superficial siderosis. Yes, free iron wreaks… Read More... "The Pathway To Healing"
Superficial Siderosis Webinar Transcript
3 Living With Superficial Siderosis July 28, 2015 September 2, 2021 27 Webinars
Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy To view the recorded webinar you may watch here Download a copy of the transcript and slides here Click on the individual slide to view larger Hi, my name… Read More... "Superficial Siderosis Webinar Transcript"
Superficial Siderosis Webinar
2 Living With Superficial Siderosis July 23, 2015 September 2, 2021 1 Webinars
Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what… Read More... "Superficial Siderosis Webinar"