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Taking a peek inside with a full-body MRI (at 1mm^3 resolution) It's a preventative screen I have done a few times now, most recently at prenuvo. They measure brain volume changes over time, screen for tumors, bone spurs and cysts, and scan the brain arteries for aneurysms. 👍

12,000 次观看 • 1 年前 •via X (Twitter)

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💜 One Last Update! 💜 Last week when we were in Minnesota for Clark’s 6-month follow-up for his clinical trial, of all the tests they ran, the one we were both most anxious and most eager to see results from was his brain MRI. For children with untreated Sanfilippo Type A, it’s typical to see 2–5% loss of brain volume each year, along with enlargement of the ventricles (the fluid-filled spaces in the brain). This is one of the most heartbreaking parts of the disease — watching the brain slowly lose tissue and function over time. We were so nervous that Clark’s MRI might show some loss compared to his baseline scan 6 months ago. But the results came back and… ✨ ZERO change. ✨ His brain volume and ventricle size were completely stable — no loss at all. This is such an incredible sign that the treatment may be doing exactly what it’s meant to: clearing the toxic waste from his brain cells and protecting his brain from further damage. If feel that it is SO important for us to share these results as they come because people need to be FULLY aware that these treatments that are out there WORK. These children with Sanfilippo do not need to regress and they DEFINITELY do not have to have their lives cut short. We just need the FDA to say yes. We are so close to a reality where Sanfilippo syndrome is as manageable as a disease like diabetes. P.S. Enjoy this video of our little sunshine having the best time singing!

Brutus Stark

48,090 次观看 • 9 个月前