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I forwarded info you went on this drug to the Pgh NF group, and she reminded me that at an NF Inc. meeting we attended last year, there was a guy with severe NF1, who was participating in trials at Mayo; and she said it was this drug. (clueless me cannot remember of course, thinking it was NF1 and not paying much attention). I am contacting a lady at NF Inc to see if they have had any follow up on this fellow to see what they know about how things went. Marie

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