I have received an invitation to a conference put on by PSC Partners Seeking a Cure. It appears to be mainly an educational meeting in Pittsburgh the last weekend in April. They also raise money for PSC research. Have any of our LWPSC members attended such meetings in the past and were they worthwhile? Here is their homepage:
EAD3
Hi, EAD3. :)
The conferences are absolutely amazing. Not only are they incredibly educational, the opportunity to bond with PSCers and their caregivers from all over the world is absolutely astounding. There's just nothing like being in a room full of people who really, truly get it.
No matter what stage of the disease you're in, the conference is full of information. You'll find doctors who really take an interest in PSC and are willing to answer questions and interact with patients; and you'll have the opportunity to meet with other PSCers and share tips, advice and stories.
I'd encourage you to attend if you can. I think you'll find it was one of the best decisions you've ever made. If you're interested, you can also look at content from past conferences at www.pscpartners.org/prevannual.
Hope to see you there!
Sandi
Thanks, Sandy, for the encouragement! I already have registered and have a hotel room.
EAD3
Looking forward to meeting you! :)
I traveled twice from Israel to attend this conference. They are amazing. I am sorry I can't be there this year.
Checking out costs this week!
I have been to the past two conferences and they were wonderful experiences! Being with people that really understand is something nothing can compare to.I am hoping to go this year as well.
Any advice on how I should present to Nay a trip across the U.S. for a conference (we’re near SF,CA)?? I really, really want to go. I know he’ll leave with inspiraion and information that we wouldn’t find elsewhere. Nay will need some coaxing though!
Gloria, well, let's see, they begin with a river cruise (I think it's dinner) for just $20 and they have a special banquet at some point. (Good food and fun.) There are a lot of historic sites to see in Pittsburgh. I have friend who lives there and loves it - and she's from the NW! I think the best and most supportive thing will be meeting lots of people going through the same ordeal he is, with variations. I go to a face-to-face liver support group once a month and I can't tell you what it means to me to be able to attend and learn so much from these veterans. Most of the members have hep C and I met a woman, already transplanted, with PSC this last meeting. But ALL liver patients end up in the same place, with cirrhosis, and with the same issues. So, online groups can go just so far, and then you meet people one-on-one and it's just the best.
Anyway, those are my 2 cents. And hope he is coax-able. Flights are ridiculous. I'd try Priceline if I were you and do the negotiation thing with them - start ridiculously low! But the rest of the cost is very affordable.
Dana
The cruise is brunch. The pre conference brunch is a wonderful way to start to meet most of the people attending the conference. Many come even the night before and mingle too. They are a wonderful bunch of people from all over the world and I miss them when I leave and until I get back to be with them again. i am hoping to go again this year.
Danabee: Sounds so nice.
I can negotiate pricing?!
not as far as the conference fees go. You can try to share a room at the hotel with someone if that helps, when you register you can ask PSC Partners to see if someone wants to share a room. It is also a wonderful experience for caregivers!
I keep trying to send this and am getting kicked off:
Anyway, tell Nay that "Mike Tyson, The Undisputed Truth" is showing at the Grand Chapiteau at The Strip District the 26th and 27th. It's a one man show that Spike Lee apparently put together. I bet several of us guys would join Nay if he wants to take that in. AA also has a fare war going on.
EAD3
EAD3,
This is very exciting. I am looking forward to meeting you! This year's conference in Pittsburgh is sort of a PSC homecoming for our family. Our thirteen year old son was diagnosed with PSC and UC nine years ago. We attended our first PSC Partners conference in 2006 at Pittsburgh. We found comfort, information, hope and an incredible community of friends who are walking the PSC journey with us.
Ken Shepherd
Yes, Gloria. It's kinda fun. But really start out with a mind like you're trying to rob them blind! They'll meet it or not, and if not just move up a notch. I've done it once and I'll do it again. Really worthwhile!
Gloria said:
Danabee: Sounds so nice.
I can negotiate pricing?!
This was part of a discussion about Priceline - NOT the conference! LOL
danabee said:
Yes, Gloria. It's kinda fun. But really start out with a mind like you're trying to rob them blind! They'll meet it or not, and if not just move up a notch. I've done it once and I'll do it again. Really worthwhile!
Gloria said:Danabee: Sounds so nice.
I can negotiate pricing?!
…I think we may be attending the conference! 
Fantastic news, Gloria. We'll look forward to meeting you! Come find me and say hi, will you? :)
What is thre exact date of the Conference and can I still maybe get involved ??
April 26 - 28. you can still register through PSC partners Seeking A cure