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Superficial Siderosis Research

 

Superficial Siderosis research seems to be an overlooked area because of the rarity of documented instances. It wasn’t too long ago there were less than 270 documented cases worldwide, but that seems to be changing. The symptoms mirror so many other disorders it is sometimes misdiagnosed as Multiple Sclerosis or Parkinsons.

The Superficial Siderosis clinic at Johns Hopkins is the only facility with ongoing clinical research that we know of at this time. Their pilot study of Deferiprone was instrumental in getting FDA approval here in the U.S. for use in chelation therapy of Superficial Siderosis patients.

Dr. Michael Levy and others conducted this study with the help of a small grant from ApoPharma, and when funds ran out, he paid for the completion of the study out of his pocket.

These research and trials are ongoing so all of us may have some hope the neurodegeneration can be stopped and we can look forward to a better quality of life.

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Department of Neurology

Please specify:  Superficial Siderosis Clinic/ Dr. Michael Levy

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 The Silent Bleed website is selling wristbands to raise awareness

The Silent Bleed group are working toward becoming the face of worldwide Superficial Siderosis awareness. Their site offers information downloads, hosts the “Ask the Specialist” section where you can ask Dr. Levy questions directly and sponsor 5k Fun Walk/Runs. The proceeds from all their fundraising activities help fund continuing research. If you live in a country with an NHS medical system, they are more than happy to offer advice on navigating the system.

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 Click on the wristband

 

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