My 75-year-old sister got this disease about 2 years ago and, at the rate she is deteriorating, we are afraid we will lose her in a matter of months.

I just read up on it and there is no cure. Lifespan is about 6 to 10 years. So sorry you r going thru this. Seems to be very rare.
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Reply to JoAnn29

I've done a site search for you, hope you can find something helpful:
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Reply to cwillie

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