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Re: MayoMobile post# 365533

Thursday, 07/07/2022 6:29:53 PM

Thursday, July 07, 2022 6:29:53 PM

Post# of 458293
MmayoMobile...thanks for your effrorts here and the great value you add.

There is a point we do not hear much about that you might consider. I (for example) have an identical (80 yr old) twin brother who has been diagnosed with AD and in now in a coninuing care facility 24x7. Seeing first hand how CNS diseases impact-disable normal family life is rarely openly discussed, at least that I have seen. The Quality of Life for CNS disease families is severly impacted by these diseases and yet they cannot (do not) sit around and whine about their siutation.

Any thoughtful assessment of this indirect-direct cost is a big black hole. We simply all endure whatever it takes and move on. I cannot imagine what those familes with members in a CNS Rare disease scenario must do/fell. They are told that NO EFFECTIVE TREATMENT IS available.

Your research and thoughtful writing skills might help some of us explore-endure more effectively.

All the Best...Nidan
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