My friend Annie came through - her brother was able to find out that Dr. Treon is indeed the leading expert on Waldenström's Macroglobulinemia. He (the brother) is no longer at Dana-Farber, but has many contacts there.
This prompted me to do some more googling (never binging!). There have been 6 international workshops on the disease, and Treon has been a presenter or organizer for most of them. So he should know as much as anyone about what to expect.
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