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2015 Annual Conference

2015 CONFERENCE INFORMATION

We’re pleased to announce PSC Partners Seeking a Cure’s 11th annual conference for PSCers and caregivers  which will take place in Irving, Texas  (a suburb of Dallas) from April 24-26, 2015. The conference will be held at the Omni Mandalay Hotel in conjunction with Dr. James Trotter and Baylor University Medical Center.

Please read on for futher conference details or use the quick links below to jump to a specific topic of interest.

NEW FOR 2015: Based on requests from 2014 conference attendees to expand the conference and to lighten the Saturday schedule, our 2015 conference will officially start at 9:30AM on Friday 4/24/15 followed by the first set of breakout presentations that afternoon.

CONFERENCE AGENDA: Please check out the 2015 conference agenda for details of the entire weekend. We strongly suggest that your travel plans permit you to attend all conference activities including the Sunday morning peer session, as many past conference attendees have commented on how valuable this session is for them.

MENTOR/MENTEE: If you are a first-time attendee (either a PSCer or a caregiver), we suggest that you request a mentor when you fill out your registration form. We will match you with a mentor who will be in your same peer group during the weekend. You will have the opportunity to communicate with your mentor before the conference and ask any questions you may have. At Friday afternoon’s Social Hour you will have the opportunity to be introduced to your Mentor/Mentee if you haven’t already connected with them earlier.

PEER GROUPS: If this is your first conference you will notice that during various parts of the weekend you will be assigned to a peer group. These groups meet together to learn and share their knowledge and experiences. From Teens to Caregivers Coping with Loss and Carrying on the Spirit there is something for everyone.   
 
TEEN PROGRAM: We have organized some targeted activities for the teen PSCers attending the conference, including an outing to The Main Event on Friday, from 12 to 3 PM.  Once the teens register for the conference, we will send them an update.
 
ATTENDEES: The nature of all conference activities is exclusively directed towards PSC patients and caregivers 13 years of age and older. We do not have the resources to provide activities, childcare or meals for children under 13 years old.
 
GO GREEN!  All of the weekend activities will take place at the Omni Mandalay Hotel at Las Colinas in Irving, TX. You will NOT need a car. Transportation information is listed below.
 
EARLY CONFERENCE CHECK-IN: There will be a PSC Partners table in the lobby area of the Omni Mandalay Hotel from Thursday morning (4/23/15) through Friday evening at 6 pm so that conference attendees can sign-in early and pick up their information packets as soon as they arrive. Please wear your nametag so that we can begin greeting each other throughout the conference.
 
We hope that you’ll consider arriving by Thursday evening April 23rd to participate in our pre-conference activity on Thursday evening. Conference attendees, particularly first time attendees, appreciate the opportunity to get acquainted with other PSCers and caregivers before our more formal educational schedule starts on Friday. We encourage you to come early, if possible.

PRE-CONFERENCE CASUAL DINNER FOR THURSDAY, APRIL 23: Please stop in and join us at the pre-conference casual get together/dinner from 6-9 pm. We will post location details as soon they have been finalized. Be sure to make your travel arrangements with this in mind.

THE REMAINING CONFERENCE ACTIVITIES WILL TAKE PLACE AT THE OMNI MANDALAY HOTEL

GET ACQUAINTED LAKESIDE TEXAS STYLE BRUNCH:  FRIDAY FROM 9:30 am-12:00 pm. The brunch will be held outside (weather permitting) in the lower level courtyard of the Omni Mandalay. Enjoy a warm spring day with music, optional games or swimming. Please come mingle, munch and relax. This year the cost for the brunch is included in the conference registration fee.

NEWCOMER ORIENTATION FOR FIRST-TIME ATTENDEES: 12:15 pm-12:45 pm The goal of this short session is to give first-time attendees a head start in understanding what to expect during the weekend and how to get the most out of the conference. To prepare for conference educational 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 will also provide a background on PSC Partners Seeking a Cure Foundation, our family-style culture, who to ask for help, what to expect in each session and how to successfully navigate the jam-packed weekend. Please take a look at our conference FAQs.
 
NEW FRIDAY BREAKOUT SESSION: 1:30 pm-2:30 pm We listened to all of your feedback and are now offering one breakout session on Friday and two on Saturday. 
 
SOCIAL HOUR AND SNACK: 2:30 pm- 3:45 pm: Enjoy a snack and visit with other members of the PSC community. Come meet and greet your mentor/mentee, peer group and the PSC Partners Board of Directors.
 
FRIDAY WELCOME DINNER: 5:30 pm – 8:30 pm During the Friday Welcome Dinner, guests will be seated with attendees from your geographic region.
 
BREAKS DURING THE CONFERENCE WEEKEND: During the longer breaks throughout the weekend, we will hopefully be enjoying warm spring weather. Please plan to bring your swimsuit, exercise and comfortable clothing so that you can take advantage of the walking trails, pool and exercise room at the hotel.   

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CONFERENCE FEES: Conference registration fee includes: Friday brunch and afternoon snack, evening reception dinner, Saturday breakfast, lunch, snacks and banquet dinner, Sunday breakfast and snack, evening entertainment, teen outing, all presentations, breakouts, open forums and conference materials. Please note that the registration fees have increased this year, due to the extended Friday programming, the inclusion of the brunch fees in the conference registration fees and increased facility charges. The conference fee cannot be pro-rated: It applies to ALL who attend ANY PART of our conference. 
 
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 2015 conference sponsors subsidize a significant portion of your conference costs. (In 2014, our generous conference sponsors covered 60% of the cost for each attendee!)
 
Early Bird registration through 2/13/2015          
$190 per person
 
Regular registration from 2/14/2015 to 3/26/2015
$200 per person

 
Late registration from 3/27/2015 to 4/10/2015
$210 per person

Corporate Professional registration to 4/10/2015
$270 per person
   

CONFERENCE REGISTRATION: Conference registration will be available both online and by mail.  Registration will open very soon!

Conference Sponsors: We are greatly indebted to our conference sponsors who support our mission and help lower our costs and registration fees.  

Thank you to our 2015 conference sponsors!

How to Become a Conference Sponsor: We are still in the process of looking for community and corporate conference sponsors, so if you are interested in becoming a sponsor or if you know someone whom we should contact, please email us at contactus@pscpartners.org.  For a list of the community sponsorship opportunities, please click here, and for corporate sponsorship opportunities, please click here.

 
IMPORTANT HOTEL INFORMATION

All 2015 PSC Partners conference events (starting Friday morning, April 24th) will take place at the Omni Mandalay at Las Colinas, located at 221 E Las Colinas Blvd, Irving, TX 75039, (972) 556-0800. There are other Omnis in the Dallas area; please make sure you are booking at the Omni Mandalay at Las Colinas in Irving, TX! The Omni is conveniently located just a short drive from both Dallas/Fort Worth International Airport and Dallas Love Field.

We are pleased to offer a discounted group rate for conference attendees. This year, because Dallas prices are so high, PSC Partners Seeking a Cure and the Irving Convention Visitors Bureau are subsidizing a portion of each nightly guestroom charge in order to keep costs to $115.96 per room per night plus taxes and fees.  
 
Reservations: The Omni Mandalay at Las Colinas has set up a personalized group page for conference attendees to reserve their hotel rooms. To take advantage of our special subsidized group rate, please click HERE. If additional reservation assistance is needed, please call 1-800-843-6664.
 
These special group rates offered by the Omni are available to our conference attendees from April 20-27, in the event that you would like to extend your stay before or after the conference. The special room rate will be available until the Omni’s discounted rate deadline of April 3rd or until the group block is sold out, whichever comes first. After April 3rd, 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.   

Transportation Information
 
Parking at the Omni Mandalay at Las Colinas: There is limited complimentary self-parking at the hotel for guests in our group based on availability.
 
Shuttle Service: We have obtained a round trip rate of $32 from Dallas/Fort Worth International Airport and $34 from Dallas Love Field, with SuperShuttle for shuttle to the Omni Mandalay at Las Colinas. This group discount applies to reservations made online, only, in advance, using Group Discount Code Z4TNE. To make your reservation, please click here.
 
The typical one-way minimum charge from the Omni Mandalay at Las Colinas to the following airports:

Dallas/Ft. Worth (DFW)      Provider       Dallas Love Field (DAL)
 
      $19-$21 USD              SuperShuttle         $19-$21 USD
         $40 USD                      Taxi                    $40 USD
         $35 USD                   Towncar                 $35 USD
 
Directions to the Omni Mandalay at Las Colinas 
221 E. Las Colinas Blvd Irving, TX 75039
Telephone: 972-556-0800
 
From DFW Airport:
Take the North exit to the TX-114 East (to Dallas). Follow TX-114 East and exit O´Connor Blvd. Turn left on O´Connor. Make a right turn onto Las Colinas Boulevard. Omni Mandalay Hotel at Las Colinas will be on the left. Drive time: Approximately 15 minutes.
 
From Love Field Airport:
Exit the airport and turn right on Mockingbird Lane. Take Mockingbird Lane to TX-183 West. Take the right fork in the road (toward Irving/Grapevine). Exit O’Connor (TX-114 West) and make a right on O’Connor Blvd. At the first light, take a right on Las Colinas Boulevard. Omni Mandalay Hotel at Las Colinas will be on the left. Drive time: Approximately 20 minutes.
 
Coming from Fort Worth:
Start on 1-30 E. Take exit 32A for Texas 161. Keep left at the fork, drive approximately 2 miles and merge onto President George Bush Turnpike N. Take exit for TX-114/Royal Ln. Merge onto TX-161 N, then turn right onto West John W Carpenter Freeway and then continue onto East John Carpenter Fwy. Turn left onto Wingren Rd, then a left on E Las Colinas Blvd and Omni Mandalay Hotel at Las Colinas will be on the right. Approximately 35 minutes.
 
Coming from Downtown Dallas:
Take I-35E North and stay in the left lane to TX-114 West (toward DFW Airport). Take TX-114 West and exit O´Connor Blvd.. Take a right on O´Connor, and go one block. Take a right onto Las Colinas Boulevard. Omni Mandalay Hotel at Las Colinas will be on the left. Drive time: Approximately 25 minutes.

For more local directions to the Omni Mandalay at Las Colinas click
here.
 
Local Transportation 
 
Omni Mandalay at Las Colinas: The Omni Mandalay offers complimentary shuttle service within a five-mile radius of the hotel to local businesses. Availability is on a first-come, first-serve basis.
 
DART Rail Service:  The Omni Mandalay at Las Colinas is near the DART Urban Center Station and is on the orange line.  You can see the DART map by clicking here. The Omni Mandalay offers complimentary shuttle service to and from the Urban Center Station. If you wish to take the DART, please call the hotel at 972-556-0800 once you get off at the Urban Center Station and the hotel will be more than happy to come and pick you up in their courtesy shuttle service to bring you to the hotel.
 
For Athletic Minded Travelers: Walking/jogging trail maps are available at the concierge desk.
 
OTHER PERTINENT INFORMATION
 
CONFERENCE FAQs: If this will be your first PSC Partners conference, be sure to visit the FAQ section on our website. In addition, please plan to attend the Newcomer Orientation presentation on Friday, 4/24/15 at 12:15PM.  If you need further information or have any questions, please write to Ricky, Meegan or Stacy at contactus@pscpartners.org
 
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 or Stacy before the conference at contactus@pscpartners.org
 
CONFERENCE FLYER: Click here for our Conference Flyer.  Please help us by printing copies and delivering the flyers to your gastroenterologist or hepatologist to display in his/her office.

CONFERENCE STORIES: Here are some post conference comments and articles from 2014 conference attendees: 

“I had a great time at the PSC conference in Denver. It was my first time going and I came away overwhelmed with the amount of support. I feel like I have gained a new family. For those of you that have not been yet, please go. You will probably come out feeling like you finally connect with people who know what you have been through.”

“My husband and I just returned from my first PSC conference (he has been before). For the first time, I don’t feel alone. We have a support network of people who know/understand our journey. I encourage anyone who has a loved one with PSC to attend this conference- you will make friends, learn a lot of information, and walk away empowered. It was a tough but wonderful weekend all in one. As we progress in the journey, I am thankful for the people in this group. If anyone out there is like me, and isn’t sure about attending, I hope you decide to come in 2015. You aren’t alone!”

“What a WONDERFUL weekend of everything that is good about living with something, decidedly not-so-good!”
 
“I highly encourage you to come next year in Dallas, it will make the walk a bit easier and comforting to know one thing; you are not alone as we have your back!”
 
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Fred Sabernick, Post-Transplant PSCer

I came to my first conference out of fear.

I knew next to nothing about PSC (and nothing about PSC Partners). I only came because this unknown disease had put me in an ICU during the previous summer and that the three letter diagnosis I had been given – and mostly ignored – five years prior was starting to have an impact on my life, and I was afraid of what might happen next.

I had never met another soul with PSC.

I came to that first conference and spent three wonderful days with the friendliest, most welcoming group of people I could have ever imagined. An immeasurable power was generated within our group by simply coming together and confronting our demons, sharing our experiences, and supporting each other. It was a power strong enough to sustain me through dark times.

I left my first conference with a new family.

People sometimes ask me how anyone can enjoy themselves and have fun in a gathering of people whose common connection is a terrible disease. They don’t understand we are defined by so much more than PSC. To quote a friend, we may have the disease but the disease does not have us.

I come back to each annual conference for love.

Love of my PSC family, love of the good times that I know we will spend together. Love of the power that we share during each get together …the power of family.

Come to Dallas in 2015. Come meet your new family.

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Chris Browner, Parent of Pediatric PSCer

With Ricky and Don's encouragement, my husband and I attended our first PSC Partners Seeking a Cure Conference this year (April 2014). Our 15 year old son was diagnosed with PSC & AIH in the spring of 2013. It has been a year of research and lots of doctor visits to learn more about these diseases. From the beginning, PSC Partners has been a very important source of information and support for our family. So when we learned about the conference, we knew right away we wanted (needed!) to attend. 

My husband and I were immediately blown away by the sense of family. For the first time, we met other parents, caregivers, and PSCers who "get it". What an unbelievable feeling of support! Everyone was incredibly welcoming to us newbies. And the conference was impressively organized. Every detail had been thought of and attended to. I was most impressed by the knowledge & expertise of the presenters. We felt especially comforted to hear so many really smart people talk about what they are doing to help find a cure. We walked away from the weekend feeling supported and hopeful. Hopeful that one day every PSCer and the people who love them will live lives free of hardship and worry. We can't wait until next year's conference!

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Jeremy Burke
Caregivers Coping with Loss and Carrying On the Spirit

I was a bit more than a little unsure about attending this year's conference. In years past, it has always been so helpful to learn more about PSC and the related health issues, hear about new research and emerging treatments, and meet others impacted by the disease. Because of Philip's death after his long battle with PSC, I wasn't sure exactly how I would react, how others would react, or what I would really get out of being at the conference. What I found, however, was that being at the conference this year meant so much more than any of the prior conferences I've attended.

While I was right that the presentations themselves didn't have nearly as much meaning for me personally this year, I fully realized that the conference is about so much more than 'just' learning about the disease. Above and beyond all of the education provided, being able to be with other people that "get it" was an experience beyond words. And it is that experience of community that will keep me coming back!

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Lindsey Nanz, Teen PSCer

De-Liver-ance

I wish I had known about PSC Partners before my transplant. I was diagnosed with PSC when I was thirteen, put on the transplant list when I was fourteen, and got my transplant when I was fifteen. My parents and I went through the entire process of diagnosis, research, transplant, and recovery without knowing another PSC patient - male, female, young, old, or otherwise. It was scary not knowing what to expect but we made it through recovery with the support of family and friends. We celebrated my two-year anniversary post-transplant thinking we were done with PSC for good. Not so.

A couple months after that celebration I had a biopsy showing early-stage PSC in my new liver. I was devastated. I didn’t want to have to go through the whole process alone again. Luckily, a family friend had told us about PSC Partners and my parents decided to take me to the 2014 conference. It was a surreal moment heading back to my hotel room that first conference night, having finally met another person with PSC after five years of feeling alone. I have plenty of teenage transplant friends who had other diseases, but it was nice knowing that another teenager had gone through the same process as me. I had finally been delivered from the fear of being alone in the world of teenage PSC.

Looking back, it’s difficult to find the words that describe how I felt during the conference. The only expression that does my position justice is to say that I would definitely come again next year! I learned so much from the speakers, the small group discussions, and all the other people who participated. The conference changed my perception of chronic illness and quality of life. The most eye-opening moment I had that weekend was when I discovered that PSC differs so much between patients. I met people who have had many transplants because of recurrent PSC and some who have never been transplanted, people who have had countless complications and others who experience no symptoms whatsoever. I take comfort in the knowledge that I have a family of PSCers to lean on and I am beyond grateful that I don’t have to journey alone again.

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Natalie Hendrix
Female PSCer in her 20s/30s

 A strange thing happened when I walked into dinner the first night of the conference; I started to think I had met all of these people before. 

Like many of you, I was hesitant as to whether I should attend the conference. Actually, no--I was gung-ho about going until about a month out, when I started to think, "should we be doing this?  Is this what we should be spending our money on?  We have two young boys with busy schedules, medical bills (of course), and a brand new dog--this is insane!  And do I even want to think this much about my failing body when, for now, I feel kind of OK?"  

In just the first day of the conference it was clear that the answer to all of these questions was, "Yes."  After about the fifth or sixth time of asking my husband, "Don't I KNOW him/her??" (and learning that no, I didn't), I started to realize that these were just my people.  Aside from looking like many people in the room (thanks to whatever awesome, defunct genetic connection there is for some of us Norwegians), I simply felt somehow connected to everyone. There was a palpable positive energy and camaraderie the entire weekend.  And, by the end of the last day, strangers were friends, the overwhelmed were empowered and the hardened were tearing up. And everyone was laughing.

And now here I am.  Still newly diagnosed (a little over a year ago), but fully armed with the knowledge of someone who has had PSC for decades--and writing this blurb for PSC Partners!  You may relate to the feeling I had come to of, "well, I've read all I can, I've had all of my tests, no one can really tell me what to expect and when....so I guess I'll hang out and wait to get really sick."  It felt helpless and endless. And I can honestly say that, since the conference, I don't feel that so heavily any more.

And, if you are wondering, the answer was also, "yes" to the question of whether my husband should take the time and money to come with me. I feel so grateful that both my mother and husband went, and in addition to all of the knowledge we gained from attending separate breakout sessions, I now have two people who, by the end of the weekend, really "got it" as much as anyone without PSC can. And that is priceless. 

So I hope that you, too, find that all of the answers to your questions point to "yes" and that you go. I really think that you'll be glad that you did.

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WHAT TO DO AROUND TOWN : ACTIVITIES AND SUGGESTIONS FOR THE DALLAS AREA


The performing and fine arts community in Irving welcomed a new home in 1990 with the completion of the Irving Arts Center. The Arts Center's 10-acre complex, nestled in the heart of Dallas-Fort Worth, features two fully-equipped theaters; four galleries; meeting, classroom, reception and rehearsal facilities; and a verdant sculpture garden. The Arts Center - a department of the City of Irving - was designed to accommodate a wide range of cultural and civic needs.
 
 
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The Dallas World Aquarium

The adventure at The Dallas World Aquarium begins at the top of the rainforest exhibit, where exotic birds, such as Cocks-of-the-rock and many species of toucans, can be seen. Lounging around are Two-toed and Three-toed sloths. Endangered animals, such as Orinoco crocodiles, Giant river otters, Antillean manatees and several species of monkeys are part of the many conservation projects. The aquarium portion displays interesting marine life, including Japanese crabs, jellyfish, Leafy, Weedy and Ribbon seadragons. Black-footed and Blue penguins can be seen swimming as guests enjoy the outdoor South Africa exhibit. Sharks, rays and sawfish are only a few of the fish living in the Mundo Maya cenote. Safe from Neotropical eagles, are euphonias, tanagers and hummingbirds. Reptiles and amphibians, both of significance to the Maya culture, can be seen throughout the exhibit. Open 7 days a week from 10 a.m. - 5 p.m.
 

The Sixth Floor Museum at Dealey Plaza is located in the former Texas School Book Depository where significant evidence of a sniper was found following the assassination of President John F. Kennedy. The Museum presents the social and political landscape of the early 1960s, chronicles President Kennedy’s assassination and its aftermath, and reflects upon his lasting impact on our country and world. Open 7 days a week 10 AM-6 PM Tuesday-Sunday and Noon-6 PM Monday.
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Dallas Arboretum

Just minutes from downtown on the shore of White Rock Lake, the Dallas Arboretum features 66 acres with 11 lush display gardens that offer seasonal color all year long. Home of Dallas Blooms Spring, the Southwest's largest outdoor floral festival, the Arboretum provides a tranquil oasis where visitors are surrounded by the beauty of all four seasons. Amenities include the Hoffman Family Gift Shop, a dining terrace.

The Perot Museum of Nature and Science, which opened on Dec. 1, 2012, offers dynamic experiences to stimulate curiosity in visitors of all ages. With 180,000 square feet of space, standing 170 feet tall (equivalent to an average 14-story building) the revolutionary Perot Museum extends beyond the typical "museum" perception. The extraordinary building and outdoor space serves as a living science lesson, offering provocative illustrations of engineering, technology and conservation.

The George W. Bush Presidential Center is a state-of-the art facility in a prominent 23 acre site on the campus of Southern Methodist University in Dallas, Texas funded by the George W. Bush Foundation. In addition to the permanent exhibit, the building also features a temporary exhibit gallery, and auditorium, a Presidential records research center, and multiple classrooms.

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For more than 50 years, Six Flags Over Texas has been providing family fun with over 100 thrilling rides and attractions, including mega-coasters like Titan and the all NEW Texas Giant. Enjoy a variety of family-friendly shows and attractions, plus fun-filled themed areas like Looney Tunes USA for the kids.

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One of the most expansive stadiums ever to be built, AT&T Stadium is a modern marvel located west of Dallas in the city of Arlington. It also happens to be the largest domed structure in the world . This 1.2 billion dollar football stadium spared no expense to create a luxurious facility. With more than 300 suites, numerous different clubs, a retractable roof that can open and close in 12 minutes, the tallest movable glass in the world, and the world’s largest scoreboard, this facility is unrivaled by any current stadium.