Re: Ricky conference question - FROM RICKY SAFER

[Guest guest]

First off I would like to say that I am sorry that my post was taken

as a 'complaint' I prefaced what I said by complimenting all of the

hard work Ricky has done. The source was apparently the doctors

themselves. The doctors told a patient's mom that they were turned

down to speak at the conference. I was just wondering if that decision

could be reversed somehow and the doctor(s) could speak at the

conference. I don't know who makes the decisions about who

does/doesn't speak at the conferences so I thought I would ask. I'm

sorry if my post was taken as a complaint. I am still hoping that the

pediatric doctors from Stanford who are actively studying new

teatments for PSC could be included in the speakers for 2009.

Lori

>

> I am posting this on Ricky Safer's behalf, as she is out of town and

has

> sporadic computer access. ~

>

> Dear Lori and Becky,

>

> I just read both of your emails, and I have to honestly say that I am a

> bit confused about your complaints. I don't know what you are talking

> about, so please go back to your source and let me know the details of

> what happened???Please write to me at thesafers@...

> because I'm out of town for another week, and

> I'm not following the Yahoo posts.

>

> Becky Long and I have been working with the physicians at Northwestern

> to plan the agenda for the 2009 conference, and it will be published

> very soon! You will be glad to know that an excellent pediatric

> specialist will be speaking at the conference and will also be

running a

> special breakout session for parents of pediatric PSCers.

>

> Ricky

> PSC 2003

>

>

> <

Posted by: " Don & Becky Vardell " dbvardell@... beckyvardell

> Sat Jan 10, 2009 9:36 am (PST)

>

> 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...>>.

>

> ---------------------------------------------

> <

> Posted by: " wildwildtrips " clwild1@... wildwildtrips

> Sat Jan 10, 2009 9:28 am (PST)

>

> <<...I heard (from a patient's mom)

> that the 2 pediatric doctors at Stanford who are conducting the

> vancomycin trials were interested in speaking but that they were told

> no. Is there a reason why they couldn't be added to the schedule on

> Sat as an option for parents of pediatric PSC patients ? ...

>

> Thanks for any feedback you can provide on why they were told no and

> info about how they could be added to the agenda.

>

> Lori

> lucky mom blessed with triplets>>

>

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>