Re: Ricky conference question

[Guest guest]

I would definitely second that!! I think turning these two doctors away for the 2009 conference sends the wrong message to doctors who are willing to travel and share their experiences. Since they have published a paper this year, and oral Vanco usage seems to be on the rise, it would be very timely to have them speak this year in a break-out session at the very least.

Our son Carson is currently on his first month of Vanco and we'll be doing lab work in one week to see if his numbers have improved. So, it's a hot-topic for us on a very personal level.

Thanks,

Becky, mom to Carson (psc/uc '08) and Eva (celiac '08)

Thanks for all of the hard work you do with the foundation and withthe conferences ! I have a question about a potential speaker(s) forthe conference in Chicago this year. I heard (from a patient's mom)

that the 2 pediatric doctors at Stanford who are conducting thevancomycin trials were interested in speaking but that they were toldno. Is there a reason why they couldn't be added to the schedule onSat as an option for parents of pediatric PSC patients ? I for one am

VERY interested in talking to them/hearing them speak and I knowothers with PSC kids would be too. I think it would be very helpful tohear from more pediatric GIs /heaptologists for a lot of parents. It'snot the same disease in kids as it is in adults- or at least it

manifests differently in kids from everything I have read/talked todrs about. Thanks for any feedback you can provide on why they were told no andinfo about how they could be added to the agenda. Lori

lucky mom blessed with triplets