Hey, my name is Jonathan Long. I was just diagnosed and I’m very interested in learning what this syndrome is all about.  It’s really kind of odd.  My family has a long history of cancer, and I have a hunch now I know why. Two of my aunts have breast cancer, and claim they have the skin discolorations described by the syndrome.  I’ll be going to Bethesda for a medical trial.  For those of you who don’t know, you should give them a call.  They are paying for airfare and hotel.  All you have to pay for is meals.  All the study stuff is free.  I’m looking forward to the genetic test so I can pass the results to my family and see how many of my aunts and uncles have it… as well if seeing if my daughter inherited it.

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