Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease


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January Update

It’s been a crazy, hectic month……


The GOOD news:

After SEVEN MONTHS of planning, FDA approvals, baseline testing, and 2 pharmacies refusing to mix the compound, we FINALLY have a start date for the new IT Treatments.  These treatments will allow us to inject the Cyclodextrin compound directly into the spinal fluid, which hopefully delivers it to the brain to start clearing the cholesterol out of the neurons.  So, next Monday we go to Oakland for our first treatment, and then will have to go every 2 weeks after that for “a while”.



Bryan & Laura



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