Re: Ricky conference question - FROM RICKY SAFER

[Guest guest]

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

<<Re: Ricky conference question

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...>>.

---------------------------------------------

<<Re: Ricky conference question

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>>

[Guest guest]

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

<<Re: Ricky conference question

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...>>.

---------------------------------------------

<<Re: Ricky conference question

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>>

[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>>

>

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

>