Our Next Annual Conference

2012 CONFERENCE INFORMATION

We’re pleased to announce PSC Partners Seeking a Cure’s eighth annual conference for PSCers and caregivers which will take place in Rochester, Minnesota May 4-6, 2012 in association with the Mayo Clinic. Thank you to Drs. Keith D. Lindor, Konstantinos N. Lazaridis and Jayant A. Talwalkar for their professional guidance.

Ricky Safer and Sandi Pearlman, 2012 Conference Co-Chairs

CONFERENCE AGENDA

Click here for the 2012 conference agenda and details of the entire weekend.

NOTES:

TEEN PROGRAM: We have organized some special activities for the teen PSCers attending the conference. Once the teens register for the conference, we will send them an update.

GO GREEN! With the exception of the Friday morning brunch at the Rochester Art Center and the Friday afternoon pre-conference session (both within easy walking distance), all weekend activities will take place in the DoubleTree Hotel, so you will NOT need a car.

EARLY REGISTRATION IN ROCHESTER

There will be a PSC Partners table in the DoubleTree ballroom foyer from Thursday morning through Friday evening at 6 p.m. so that attendees can register early and pick up their information packets as soon as they arrive.

We hope that you’ll consider arriving in Rochester by Thursday evening May 3rd to participate in our pre-conference activities on Friday. Last year, more than half of the conference attendees came early. They greatly appreciated the chance to get acquainted with the other participants and gain healthy living tips before the official start of the conference.

SUGGESTIONS FOR THURSDAY, MAY 3

DAY ACTIVITIES: If you plan to arrive in Rochester early, please check out the PSC Partners Event Site for visitor information and printable maps. We would like to suggest two unique opportunities:

There is a free tour of the Mayo Clinic campus (15 minute film and one hour walking tour), which is held weekdays at 10 a.m., beginning in the Judd Auditorium on the subway level of the Mayo Building.

There is also a free Mayo Clinic Art and Architecture Tour (one hour and fifteen minute walking tour of their excellent interior art exhibits). This tour is held weekdays at 1:30 p.m., beginning in the Judd Auditorium on the subway level of the Mayo Building. You also have the option of checking out an audio player at the Gonda Building Lobby Information Desk for a self-guided audio art tour.

EVENING ACTIVITIES: Please stop in and join us at Z Pizza in the University Shoppes, upper level, for an informal get together from 6-9 p.m., Thursday, May 3rd. Z Pizza is located in the skyway and is easily accessible from both conference hotels. Z Pizza offers a number of options including pizza, salads, sandwiches and gluten-free and vegan choices. Most menu items are under $10. Also running from 6-9 p.m. is Rochester’s Artwalk. Visit downtown Rochester businesses, studios and galleries for an evening of refreshments, entertainment, and one-on-one conversations with local studios and galleries.

PRE-CONFERENCE ACTIVITIES FRIDAY, MAY 4

GET ACQUAINTED BRUNCH FROM 10:30 a.m.-12:30 p.m. (fee $10 per person): Please join us for an informal brunch at the Rochester Art Center (www.rochesterartcenter.org), a short five minute walk from the DoubleTree Hotel via the skyway. Please register for the brunch at the same time you complete your conference registration.

FRIDAY AFTERNOON INTERACTIVE SESSION FROM 1:30-4:00 p.m.: Worried and stressed about life with PSC? Be SMART about it and join us for an interactive session in Stress Management and Resiliency Training. Whether you're a PSCer or a caregiver, stress affects us all. But we don't have to just give in or let it take control. Join Dr. Amit Sood, Associate Professor of Medicine, Director of Research and Practice, Integrative Medicine, Associate Director, General Internal Medicine Research, for an interactive session to learn how to better manage the stressors that affect your day and your life.

NEWCOMER ORIENTATION FOR FIRST TIME ATTENDEES from 5:30-6 p.m.: The goal of this short session is to give first time attendees a head start in understanding what you’ll experience during the weekend and how to get the most out of the three days. To prepare for Saturday’s sessions, we’ll hand out a packet of reference materials with medical terms, abbreviations and acronyms that will provide the necessary background to better understand the medical presentations. We’ll give you a background on PSC Partners Seeking a Cure foundation, our family-style culture, whom to ask for help, what to expect in each session and how to successfully navigate the jam-packed weekend.

MENTOR/MENTEE CASUAL MEET AND GREET from 6-6:30 p.m. If you are a first time attendee (either a PSCer or a caregiver), when you fill out your registration form, we suggest that you request a mentor. We will match you with a mentor who will be in your same group during the weekend. You will have the opportunity to communicate with your mentor before the conference and have your questions answered. This session is your chance to be introduced in person to the mentor who has been helping you, and who will continue to be your special contact.

CONFERENCE FEES

Conference registration fee includes: Friday afternoon pre-conference sessions, Friday night reception dinner, Saturday breakfast, lunch, snack and banquet dinner, Sunday breakfast and snack, all presentations, breakouts, open forums and conference materials. The conference fee applies to ALL those who attend ANY PART of our conference and cannot be pro-rated.

Early Bird Fee: From the opening of online registration until 2/10/12 $160 per person
Standard Registration Fee: 2/11/12 to 4/5/12 $170 per person
Late Registration Fee: 4/6/12 to 4/20/12 $190 per person

ALL FEES MUST BE RECEIVED BY APRIL 20.

Friday pre-conference brunch: $10 per person*

*The brunch fee is NOT included in the conference fee and will be added to your conference fees when you register.

Note: We try to keep our registration fees as low as possible, in the hope that more people will be able to attend the conference. PSC Partners and our 2012 conference sponsors subsidize a significant portion of your conference costs. (In 2011, the registration fee per person covered less than half the cost for each attendee; the rest was covered by our generous conference sponsors).

REGISTRATION INFORMATION

For online registration through our secure server, click here.

To register by mail, click here.

CONFERENCE SPONSORS

Thank you to our 2012 conference sponsors:

Silver Level Sponsors
The Pearlman Family
Ken and Patty Shepherd
Jason and Jennifer Drasner
Steve and Joanne Grieme
Steve and Joanne Hatchett

Bronze Level Sponsors:
Aubrey Goldstein and Caroline Vanneste

We are still in the process of looking for individual or corporate conference sponsors, so if you are interested in becoming a conference sponsor or if you know someone whom we should contact, please write to us at contactus@pscpartners.org.

IMPORTANT HOTEL INFORMATION

All conference events (starting Friday afternoon May 4th) will take place at the DoubleTree Hotel (150 So. Broadway). The DoubleTree is located just two blocks from the Mayo Clinic campus. To book your rooms, see the links to our special rates below.

We are pleased to offer a discounted group rate for PSC Partners Seeking a Cure attendees both at the Doubletree Hotel (where the meeting will be held) for $110 per night and also at the Hilton Garden Inn across the street for $96 per night (plus state and local taxes). The group rate will be available until April 9 OR until the group block is sold out, whichever comes first. After April 9, the discounted group rate will only be offered depending on availability and prevailing rates, so it is strongly advised that you make reservations as soon as possible to take advantage of the group rate.

You may reserve your room

Online

By phone

Doubletree: 507 281-8000
Hilton Garden Inn: 507 285-1234

TRANSPORTATION INFORMATION

Click on the PSC Partners 2012 Conference Event Site to find detailed information on getting to Rochester (by car, train or plane), ground transportation from the Rochester and Minneapolis airports to the DoubleTree and the Hilton Garden Inn, parking options, etc.

We have negotiated a special rate of $22.50 each way per person for shuttle service between the Minneapolis-St. Paul airport and the DoubleTree or the Hilton Garden Inn through Go Rochester Direct. You must make roundtrip reservations in advance for the van in order to be assured a seat. Also, please be aware that it is an hour and a half drive from the Minneapolis airport to your Rochester hotel.

MISCELLANEOUS INFORMATION

PARTICIPATE IN PSC RESEARCH WHILE YOU ARE IN ROCHESTER: Here’s your chance to make a real contribution to PSC research and help us all take a big step closer to unraveling the mysteries behind the disease. During the conference weekend, our co-host, Dr. Konstantinos Lazaridis, will be enrolling PSC patients in the important PROGRESS (PSC Resource of Genetic Risk, Environment and Synergy Studies) research project. This project is studying the genetic predisposition to PSC. For further details or to sign up for PROGRESS, click here or contact Erik Schlicht at 507 284-4312 or email schlicht.erik@mayo.edu.

As we get closer to the conference, time slots will be publicized for volunteers wanting to participate in the blood draw for PROGRESS. Blood draws will take place at the DoubleTree Hotel. It is recommended, but not required, that you enroll in the study prior to arrival in Rochester. Please consider volunteering and helping us get one step closer to a cure!

HELP US FIND A CURE FOR PSC: Please consider donating to or holding a fundraiser for our Itching for a Cure/Road to Research campaign, as all donations go directly to support PSC research. For information, click here.

PSC PARTNERS MAILING LIST: If you aren’t already on our mailing list, please sign up now on our website homepage (www.pscpartners.org) to receive e-mail updates about the conference and other programs.

ANSWERS TO YOUR QUESTIONS:

2012 PSC PARTNERS CONFERENCE EVENT SITE: The Rochester Convention and Visitors Bureau has created a wonderful event site for our conference. Click here to learn about transportation options from the Minneapolis and Rochester airports to the DoubleTree and Hilton Garden Inn hotels, free tours at the Mayo Clinic, parking options in Rochester, Rochester dining, shopping and arts guides, and printable maps of Rochester, the Mayo Clinic, and the skyway and subway routes.

CONFERENCE FAQs: If you are attending your first PSC Partners conference, be sure to visit the FAQ section on our website.

PHOTOS AT THE CONFERENCE: Informal photographs and videos will be taken throughout the conference weekend. If you object to the use of your likeness in these images for our website or promotional materials, please contact Meegan Carey any time at contactus@pscpartners.org.

CONFERENCE FLYER: Click here for our conference flyer (soon). Please print copies and deliver the flyers to your gastroenterologist or hepatologist to display in his/her office.

COMMENTS FROM PAST ATTENDEES: If this will be your first PSC Partners conference, please take the time to read comments from some of our past attendees.

VISITOR INFORMATION
For visitor information on dining, activities or parking in Rochester, click here.

Thank you for your interest in the eighth annual PSC Partners Seeking a Cure conference. It will be an informative and fun weekend filled with new insights, caring friends and a sense of hope.

If you need further information or have any questions, please write to Ricky or Meegan at contactus@pscpartners.org, or Sandi at sandi@pscpartners.org.

Personal Stories

Once more with feeling: My return trip to a PSC Partners Seeking a Cure conference

The thing I love about life-altering experiences is that even when you expect them, they can still turn out to surprise you with the myriad of ways they can touch your heart.

I mean, I knew my first PSC Partners Conference had made me into a much-improved person from the shell-shocked PSCer who walked through the doors that first Friday afternoon. I’d been given confidence, a purpose, friendships that have stood the tests of time and frequent hospitalizations.

So, when Chicago rolled around, for months on end I proudly stepped forward and touted the glories of the conference to every prospective attendee for as long and as loud as I could. I figured I knew, so to speak, what I was getting into, what would await others. I mean, I was no longer a first timer.

I already knew about the warmth of the attendees, the staggering intellect of the speakers and PSCers combined, the sheer breadth of topics covered and even a good number of the people I would see. My goal for this year’s Chicago conference was to help make sure others got that life-changing experience and to sort of live it vicariously through them.

And then I arrived and realized that life changing isn’t just once in a lifetime and it’s not just for those who have never been a part of a PSC Partners Conference before.

Life-Changing

To be honest, I’m not sure when it hit me. It may have been when the first attendees started wandering the halls. It may have been as we were packing up and preparing goody bags to hand out. It doesn’t really matter. All that matters is that suddenly, I was at ease.

I felt relaxed and happy and whole. I wasn’t the sick girl in the room. I wasn’t the one people were whispering about with the rare incurable disease. I wasn’t even the only one exhausted and scratching and itching and forgetting my words before they could come out of my mouth.

I was just in a room with a bunch of people like me who were proudly wearing their blue dots (PSCers) and their yellow dots (caregivers) and their red dots (first-timers) and green ones (transplant) all declaring that we were members of the same group, of the same family—that we were the ones who belonged.

The conference was filled with well-credentialed speakers and researchers. Some of the news was grim and some was grand. But for me, the magic of the experience was the sheer number of us.

It seemed no matter where in the room you looked, there was another 20/30 something. We were there. We were listening. We were in this together. For those of us who knew each other before, seeing each other again was like seeing a family member whose presence you’d missed without realizing it until you saw their face. Sort of like having a part of you filled in when you hadn’t even realized you missed it.

One of my beautiful PSC pals said to me, "I feel like you’re all my best friends who I can share everything and anything with, even though I only get to see you once a year or so." And she’s right. Except I’d say that what we feel goes beyond friendship really, to sort of a more familial level.

There is such safety in the room, in that group of individuals. There’s no hiding of symptoms or exhaustion. There’s no embarrassment or accusation. There’s just overwhelming support and love and understanding. And the thing is, it isn’t limited. It’s not just blue dotters (PSCers) to blue dotters but also blue to red (first-timers) and blue to yellow (caregiver) or green (transplant) or whomever.

By the end of the first day, the dots didn’t matter. We were a PSC family old and new and all together. We’d known each other a year, ten years, ten minutes. It didn’t matter and it never would again.

Speakers

Some of what we heard at the conference was rough. Some speakers hammered us over and over again with the fact that many of us might likely die before we’d ever get a cadaveric donor. Some spoke about trials that we’d had our hearts and minds invested in as though they were somewhat laughable.

And some validated us. One speaker in particular spoke of the exhaustion that pervades so many of our lives and told us that exhaustion is real, that we’re not lazy. That exhaustion is mental, physical, emotional and pervasive. I know several 20s/30s who would have stood up and applauded at this, you know, had they not been so exhausted.

Another speaker spoke about SSDI and advocating for yourself and how FMLA can be your friend. At this, one 20/30 something pulled me aside and just said he felt as though he’d been given a new lease on life, that he actually saw that he wasn’t alone, that there was help. What could be bigger than that? And while he didn’t cry, I can tell you I came darn close to it!

Healing

But for most of us, no matter how fabulous the speakers are (and they are) or how many statistics and studies are named, the true healing and education comes not in the doctors’ speeches or through the painstakingly made presentations. No, those educate. Those give us food for thought. But those aren’t the true reason that the conference means what it does.

Quite simply, it’s the togetherness. Whether through breakout groups or just hanging out in hotel lobbies, the real miracle of the conference for all of us, at least in the 20s/30s group, is each other.

Breakouts

For those of you who weren’t present at the conference or who just couldn’t make this year, each conference offers a breakout session. More than one, actually, but we’ll leave that be for the moment. The 20s/30s breakouts were separated into 20s/30s males and 20s/30s females and while it broke my heart to leave all those handsome men in another room, those breakouts are breakthroughs.

The first day’s breakouts were Lunch with a Physician. The guys adored their session. The girls. Well, maybe not so much. But day two, when we once again resumed those breakouts, there wasn’t enough time in the day to talk, to laugh, to cry, to ask questions and share stories.

For the guys and girls alike, topics spanned the social front. For the men, drinking came into focus, the should you/shouldn’t you question. For the women, we talked a lot about fertility and family and what PSC meant for us in the traditional/societal sense of being a woman and in the physical sense as to what may or may not be possible given our PSC.

But both the 20s/30s men and women found themselves in similar circumstances as we discussed dating and how to tell someone and when to tell someone you have PSC. We talked about how fatigue affects work and friendships and, to some extent, self-esteem. We talked about medications and treatments we’ve tried. We talked and we talked and we talked. And had we not had to go back to the main room, who knows, we may have been talking still.

We asked questions of the 20s/30s siblings and caregivers who joined us. We mined their souls for clues as to how the “healthy” see us, to know what our diseases do to our loved ones and how we can help them or thank them for helping us. We talked as though there wasn’t a tomorrow coming because our tomorrows will come but we won’t be together. We’ll go back to being the sick man or woman in the room.

Our blue dot status won’t make us rock stars or one of the cool kids. It’ll be life as we knew it...only, life a little better than before. Because, see, for the 20s/30s and, I’m willing to bet, the group at large, the magic moments of the conference have less to do with location and hotels and doctors pedigrees and more to do with depth of understanding and compassion and unity.

Please stay close

See, for some, PSC might stand for Primary Sclerosing Cholangitis. For us, those of us in this wonderfully wacky, extensively varied and lovely and large family, PSC stands for Please Stay Close. As in, the bonds we made are not fleeting and we need each other come what may. For we are together in the fight, whatever it takes.

And to those of you who became a part of my PSC family this year or who came and renewed the bonds, I can’t thank you enough for strengthening me and for allowing me to give to you.

And for those of you who haven’t yet become a part of this fabulous family that no one wanted to be a part of and now couldn’t dream of being without, well, we’re waiting for you. We’ll set an extra chair at the table and keep all the good stories humming for when we see you at the next conference.

Sandi P.

(This article originally appeared in our organization’s newsletter in Summer, 2009.)

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Personal Stories