Re: Ricky conference question - FROM CO-CHAIR

January 11, 2009

Hello all- I'll do my best to answer the question about conference

speakers in Ricky's absence. I am pleased to hear that Vanco has

been helpful for some of you and understand that this therapy holds

potential. I'll clarify the conference time frame just to avoid any

confusion.

Because of the planning involved and physician schedules, the

conference agenda is set almost a year in advance. We actually first

outlined the conference with Northwestern physicians October 2007.

With respect to Stanford, as I understand it at some point after the

14 patient study was published in July 2008, a patient's mom inquired

about whether Dr. Davies would be willing to participate in the PSC

conference and she agreed. If I recall correctly this suggestion was

passed along to Ricky but at that time we had already committed our

presentation time and our limited travel budget to guest speakers Dr.

Heathcote (internationally renowned PSC expert), Dr.

Lazaridis (heading up the PSC database at Mayo), and Jaff

(advocacy attorney for patients with chronic illnesses in CT).

Neither Ricky nor I had had any direct contact with or requests from

Stanford doctors. Please be assured that PSC Partners is sensitive

to the concerns of the parents group and has given much thought to

each of these decisions. We have a wonderful physician from

Children's Memorial, Jeff Brown, scheduled to host a pediatric

session and discuss the implications of this study. Jaff is

also prepared to discuss IEPs and other educational issues.

We welcome input and involvement as our membership and interest in

pediatric PSC grows. With the addition of the Mass General trial,

perhaps by next year there will be even more information to consider

about Vanco. I appreciate the suggestion of regional conference

planning/participation, particularly since it seems we have had

several families in the Northeast and California express an interest

in hosting. Rest assured the 2009 Chicago conference promises to be

informative and action-packed. Information and registration forms

will be posted next week and and we hope to see many of you there!

Thank you,

Becky Long

PSC '03

2009 Conference Co-Chair

.... I was just wondering if that decision could be reversed somehow and the

doctor(s) could speak at the conference.

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