Re: PSC Yahoo Support Group and PSC Partners Seeking a Cure

[Guest guest]

Dike,

As a long time sufferer with PSC, I do appreciate the work PSC Partners Seaking a Cure, but I have not signed up for any mailing list with PSC Partners Seaking a Cure so I supect you got my email address from the PSC support group. The support group mailing list should not be used for such a mailing.

Ian

Dear PSC Supporter,The purpose of this email is to clarify the difference between thePSC Yahoo Support Group and the PSC Partners Seeking a Cure 501[c]3

foundation.PSC Yahoo® Support Group is an online support group where individualscommunicate through posted messages to each other. This is a veryactive forum which fosters candid discussions about Primary

Sclerosing Cholangitis (PSC). The posts generally includeindividuals sharing information, experiences, and questions regardingPSC.PSC Partners Seeking a Cure is a 501[c]3 non-profit foundation whichwas formed in January 2005 and whose mission is to work together to

provide research, education, and support for people affected by PSC.The focus of the foundation is broader than the focus of the supportgroup. PSC Partners Seeking a Cure aims to raise funds to researchthe causes and cures for PSC, promote PSC awareness, and educate

patients and their caregivers about PSC.How do these two groups work together?The PSC Yahoo Support Group is an active discussion group. Itsmembership grows as newly diagnosed PSC patients and their families

seek information about this disease. PSC Partners Seeking a Cureuses this forum to post information (e.g., about conferences andnewsletters) on the Support Group site.Why clarify a difference?While it is great that PSC Partners Seeking a Cure can post to the

support group, we are finding that we are not always reaching ourintended audience, as not all members are online regularly. We arefinding that we need to employ additional efforts to help to reach abroader base of people with a vested interest in PSC.

You can be better informed!In addition to our continued support of the PSC Yahoo Support Group,PSC Partners Seeking a Cure Foundation has developed a new mailinglist which should allow us to reach this broader-based audience.

By going to www.pscpartners.org scrolling down and clicking on " JoinOur Mailing List " you can sign up for an emailing list which willprovide information about any or all of the following:

1) Upcoming dates and agendas for the annual PSC Partners Seeking aCure Conference;2) Free online newsletters;3) Fundraising campaigns and efforts which you can participate in toaid in the fight to cure PSC;

4) volunteer opportunities;5) Up-to-date research (as it becomes available); and6) General information to keep you informed about the PSC PartnersSeeking a Cure Foundation at all times! (But you can opt out of the

emailing list at any time.)This is our journey and we have much to do as we seek a bettertreatment for PSC. All of us working together can make a difference.It starts with communication.Sincerely,

Dike AjiriPSC Partners Seeking a Cure Board MemberP.S. We're urgently searching for a Webmaster and Media/PR person.If you have these skills and want to help please email me directly atVolunteers@...

-- Ian Cribb P.Eng.

[Guest guest]

Have to say I disagree - I think it's important that, like Dike

explained, anyone that signs up for the support group gets the

information, just once, that this does not automatically sign them up

for the PSC Partners list. It's hard to keep track of, and I think

it's really helpful that PSC Partners sent out a mailing to

distinguish the two. Don't worry, I'm sure you won't be flooded with

emails or anything now - I think that was the point of Dike's email.

Meanwhile, Ian, did you read the article Barb just posted about pre-

cirrhosis surgery for management of PSC? I had a little trouble

getting through it but i THINK it said that Hopkins is advising non-

cirrhotic PSC patients with increased levels of Bilirubin to undergo

surgery on their biliary tract? Is that right? It made me think of

you because, isn't that what you had done - or am i just confused?

I'm very interested in this for a number of reasons - 1) it seems to

me that your management has been really well done over the last

several decade, 2) Hopkins is a really well-respected institution here

in the States and that study seemed to cover an awfully long period of

time and 3) because there's no evidence that my husband has yet

developed cirrhosis and I wonder if this is the kind of pro-active

step we should be taking before he becomes symptomatic. Does anyone

have any thoughts?

tx,

Nina in Philly

The support group mailing list should not be used for such a

> mailing.