One More Family

Be Counted

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.

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Introducing Mass General Research Institute

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Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research Institute. What better way to celebrate than a giveaway! With a few clicks or taps, you can be entered to win some really sweet swag from the good folks at Massachusetts General Hospital. You have a chance to win an Official MGH Men or Woman’s zip-front fleece jacket, MGH Ball Cap, or an official grey scarf embroidered with our SSRA logo. There will be several winners so why not enter? The contest details are below. Mass General is the #1 Hospital on the East Coast and named #2 in America by U.S. News and World Report. They are the only hospital in America to be recognized across all 16 specialties assessed by U.S. News. Let’s talk about Dr. Levys’ new facilities for a

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The Results Are In

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“Does Deferiprone provide a clinical benefit to the superficial siderosis patient?”   If you remember, the April 2017 edition of The Neurology Journal gave us an early peek at what the study findings might be in the final revision of Two-year Observational Study Of Deferiprone In Superficial Siderosis¹. The study was released this past December 28th, and the results have been published. This blog post is our cliff note version of the study, keeping in mind, we’re not medical researchers or doctors.   Initial recruitment included 48 participants.   Nine withdrew from the study because their insurance wouldn’t cover the off-label use of Ferriprox and one for other reasons. 38 people began the investigation, and over the course, two dropped out because of neutropenia concerns, four dropped for cost issues and one left for unrelated health reasons. 31 people completed the study. Each participant submitted a current neurological exam, a

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