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2014 Annual Conference

  

  

April 25-27


2014 CONFERENCE INFORMATION

We’re pleased to announce PSC Partners Seeking a Cure’s tenth annual conference for PSCers and caregivers which will take place in Denver, Colorado April 25-27. The 2014 conference has been organized in conjunction with Drs. Greg Everson and Lisa Forman and their colleagues at University of Colorado Hospital and Drs. Cara Mack, Shikha Sundaram and Michael Narkewicz at Children’s Hospital Colorado. This year, we will be celebrating our foundation’s tenth anniversary, so please join us for this special weekend.

CONFERENCE AGENDA: Please check out the 2014 conference agenda for details of the entire weekend.

TEEN PROGRAM: We have organized some targeted activities for the teen PSCers attending the conference. 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! With the exception of the Friday morning brunch at Red Rocks Park where round trip transportation is included in your fee, all weekend activities will take place in the Hyatt Regency Denver Tech Center Hotel, so you will NOT need a car. Transportation information is listed below.

EARLY CONFERENCE CHECK-IN: There will be a PSC Partners table in the Hyatt Regency Denver Tech Center (DTC) Hotel in the Atrium from Thursday morning (4/24/14) 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 in Denver by Thursday evening April 24th to participate in our pre-conference activities on Thursday evening and Friday during the day. 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 Saturday. We encourage you to come early, if possible.

PRE-CONFERENCE SCHEDULE OF EVENTS
FOR THURSDAY, APRIL 24 AND FRIDAY, APRIL 25

THURSDAY EVENING: Please stop in and join us at Garcia’s Mexican Restaurant for an informal get together in their private room from 6-9 pm, Thursday, April 24th. Garcia’s is located at 5050 So. Syracuse St., just a two block walk from the Hyatt. There are a variety of reasonably priced options including a gluten free menu. Thursday dinner is not included in the conference registration fee, but is a fun opportunity to meet and visit with other attendees. www.garciasmexicanrestaurants.net/menu

GET ACQUAINTED BRUNCH OUTING:  FRIDAY FROM 8:00 am-1:00 pm (fee $25 per person includes full breakfast, museum entry and round trip private bus transportation).  The brunch will be held indoors in the Rock Room at Red Rocks Amphitheatre which is easily accessible to all attendees.  

Please join us for a delicious informal brunch at Red Rocks Park in Golden, CO, a unique setting in the foothills just west of Denver.  Red Rock Ampitheatre is a geological phenomenon–the only naturally-occurring, acoustically perfect amphitheatre in the world. From Sting and The Beatles, to opera stars and U2, every artist aspires to play on this magical, spiritual and emotional stage.  Next to The Rock Room, where we will have our brunch, there is a small museum showcasing all the famous musicians who have performed here since 1941. 

The buses will leave the Hyatt Regency DTC at 8:00 am to head up to Red Rocks Amphitheatre. The ride is approximately 35 minutes each way. Brunch will be served starting at 9:30 am. The buses will depart at 12:30 pm to return to the Hyatt Regency DTC. Weather permitting, guests will have time to walk around and explore this awesome venue. Be sure to dress in layers, as the weather can be unpredictable in late April.

All attendees must register and pay for the outing at the same time they complete their conference registration. Due to the size of The Rock Room, we are limited to the first 176 guests that register for this fun event. If you can join us for this special outing, you won’t be disappointed.


THE REMAINING CONFERENCE ACTIVITIES WILL TAKE PLACE AT THE HYATT REGENCY DENVER TECH CENTER HOTEL

FRIDAY AFTERNOON INTERACTIVE SESSION: FROM 1:45-3:00pm To the Edge and Back

We are pleased to announce that Chris Klug, a PSC Partners Honorary Board member, will be our afternoon presenter.  Chris is a PSCer and a local celebrity who lives in Aspen.  He helped pioneer the sport of snowboarding, and is a three-time US Olympian.  After his liver transplant, in 2002, Chris won an Olympic Bronze Medal in snowboarding in Salt Lake City! He is also the first ever organ transplant recipient to compete in the Olympics.  Chris has produced a documentary and written a book about his experiences.  After retiring from snowboarding, Chris became a realtor in Aspen, and he runs The Chris Klug Foundation to promote organ donation.  Come enjoy his dynamic and inspiring talk! www.chrisklugfoundation.org

NEWCOMER ORIENTATION FOR FIRST-TIME ATTENDEES: FROM 4:00 pm-4:30 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 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 will also provide 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. Please take a look at our conference FAQs.

MENTOR/MENTEE CASUAL MEET AND GREET:  FROM 4:30 pm-5:00 pm 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. 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, evening entertainment, all presentations, breakouts, open forums and conference materials. The conference fee cannot be pro-rated: It applies to ALL who attend ANY PART of our conference. 

Early Bird registration through 2/14/2014          
$170 per person

Regular registration from 2/15/2014 to 3/27/2014
$180 per person
 
Late registration from 3/28/2014 to 4/11/2014
$200 per person

Corporate Professional Registration 1/20/2014 to 4/11/2014
$250 per person

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

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 2014 conference sponsors subsidize a significant portion of your conference costs. (In 2013, 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

All registration forms and fees must be received by PSC Partners Seeking a Cure by 4/11/2014.

You have two options for registering for our 2014 conference:

1.      REGISTER ONLINE: Fill out the online form by clicking HERE. One online registration and payment for each attendee is needed. Complete each online form and submit them to us. Once your registration is processed, you will receive a confirmation letter outlining the conference events and your personal registration selections. The confirmation letter will be sent to you via the email account used to complete your registration form.
 
-OR-
 
2.      REGISTER BY MAIL: Print out the PDF version of the registration form by clicking HERE.  One registration form and payment for each attendee is needed. Once we have received and processed your paper registration form(s) and payment, a confirmation letter will be sent to you outlining the conference events and your personal registration selections. Please complete the required information and mail it back to us at:
 
PSC Partners Seeking a Cure
5237 South Kenton Way
Englewood CO 80111

Thank you to our 2014 conference sponsors:

Diamond Level Sponsors

Platinum Level Sponsors

 

 

Intercept Pharmaceuticals

Gold Level Sponsors

 

 

 

 

John and Chris Browner Family
Gilead Sciences, Inc.
The Grover Family Foundation
       - Deborah Grover Wente
Axel and Karyn Rasmussen
Don & Ricky Safer
Ken and Patty Shepherd
Anonymous

Silver Level Sponsors

 

 

 

 

 

Ruth and Doron Blatt
Jason and Jennifer Drasner
Steve and Joanne Hatchett
Fred Sabernick

Bronze Level Sponsors

 

Jeff and Reggie Belmont
Aubrey Goldstein and Caroline Vanneste
Peter and Helena Holmgren
Allan and Karen Luks
The Pearlman Family

How to Become a Conference Sponsor: We are still in the process of looking for individual 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 conference sponsorship opportunities, please click here.
  

IMPORTANT HOTEL INFORMATION

All 2014 PSC Partners conference events (starting Friday afternoon April 25th) will take place at the Hyatt Regency Denver Tech Center, located at 7800 East Tufts Avenue, Denver, CO 80237, 303-779-1234. There is a Hyatt Regency Downtown as well, so please be sure you are going to the Denver Tech Center!


We are pleased to offer a discounted group rate for conference attendees. The Hyatt DTC has set up a personalized group page for conference attendees to reserve their hotel rooms. To take advantage of our special group rate of $109 per room per night plus taxes, please click HERE. If additional reservation assistance is needed, please call 303-779-1234.

These group rates are available to our conference attendees from April 22-30, in the event that you would like to extend your stay before or after the conference. It is strongly advised that you make reservations as soon as possible to take advantage of the group rate.

 

 

Transportation Information

Parking at the Hyatt Regency DTC: There is complimentary self-parking available at the hotel for guests in our group.

Shuttle Service: We have obtained a round trip rate of $38.00, which includes a $6 discount with SuperShuttle for shuttle service between the Denver airport and the Hyatt Regency DTC. This group discount applies to reservations made online, only, in advance, using Group Discount Code PSC14. To make your reservation, please click here.

The typical one-way minimum charge from the Denver Airport to the Hyatt Regency DTC:

    SuperShuttle              $22.00 USD

    Rental Car                   Rates Vary

    Taxi                           $58.00 USD

    Towncar                     $65.00 USD

Directions to the Hyatt Regency Denver Tech Center 

7800 East Tufts Avenue Denver, Colorado, USA, 80237,
Telephone: 303 779 1234, Fax: 303 850 7164

From Denver International Airport (24 Miles):
Exit airport on Pena Boulevard South to I-70 West. Continue on I-70 to I-225 South. Exit 2A (Tamarac/DTC Boulevard) and turn left. Go under Interstate, turn right on Tufts Avenue. Hyatt Regency Denver Tech Center is at the end of the street.

Coming from the North:
Follow I-25 South to Belleview Avenue Exit and turn left. Continue through one traffic light, turn left at 2nd light, South Ulster Street. Go to (2 lights) East Tufts Avenue and turn left. This is the entrance to the hotel.

Coming from the South:
Follow I-25 North to Belleview Avenue and turn right. Continue through one traffic light, turn left at 2nd light, Ulster Street. Go (2 lights) to East Tufts Avenue and turn left. This is the entrance to the hotel.

Coming from the East:
Take I-70 West to I-225 South. Exit 2A (Tamarac/DTC Boulevard) and turn left. Go under Interstate, turn right on Tufts Avenue. Hyatt Regency Denver Tech Center is at the end of the street.

Coming from the West:
Take I-70 East to I-25 South Exit. Go South on I-25 to Belleview Avenue Exit and turn left. Continue through one traffic light, turn left at 2nd light, South Ulster Street. Go to (2 lights) East Tufts Avenue and turn left. This is the entrance to the hotel.
 

Local Transportation 

Hyatt DTC Shuttle: Hyatt Regency Denver Tech Center offers complimentary shuttle service within a five-mile radius of the hotel, including Park Meadows Retail Resort. Availability is on a first-come, first-serve basis. Any requests for trips further than five miles will be assessed a service charge. Please inquire at the Concierge desk for more information and schedules.

Light Rail Service:  The Belleview Station is a 7 minute walk from the hotel, or take the hotel shuttle to access the E line. Travel north to downtown Denver in about 20-30 minutes via RTD Light Rail. Take the Light Rail south to Park Meadows Mall. Light Rail maps and information are available at the Concierge desk or at http://www.rtd-denver.com/.

High Altitude Tips: Visitors to Colorado are often surprised by the effects of being at a higher altitude. Please remember to drink plenty of water. For caregivers who may want to drink alcohol, please limit your alcohol intake. Eat foods high in potassium. Monitor your physical activity. For additional high altitude information and Denver travel tips please visit http://www.denver.org/metro/high-altitude-tips.

 For Athletic Minded Travelers: Walking/jogging trail maps are available at the concierge desk or use this QR code to access trail maps.


OTHER PERTINENT INFORMATION

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

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.

Personal Stories:

Here are some post conference comments and articles from 2013 conference attendees:

"I think the conference is really well organized and has a balance of medical information and socializing."

"The conference was incredible. It provided a great forum for my daughter and me to strengthen our relationship. We continue to grow together on this PSC journey. Next year we will be bringing her sibling!"

"My wife and I cannot express how thankful we are that this organization exists with its friendly atmosphere and wealth of information. This conference far surpassed my expectations and my wife’s as well."

* * * * * * 

By Kapil Chopra, MD, UPMC, 2013 Conference Co‐Host

http://www.pscpartners.org/sites/default/files/images/KapilChopra-ConfStory_0.jpgAs a first time attendee to this conference what impressed me was the number of individuals – patients/caregivers who attended from different parts of the United States as well as international countries – Canada, UK and Europe – a true international gathering.


The questions asked during the interactive portions of the conference underscore the depth and sophistication of knowledge about PSC among the attendees; awareness of liver transplantation and its nuances; quest to learn more about diet; lifestyle and alternate approaches and an “open mind” to educating themselves about PSC/medical advances in this field.

It was refreshing to see the camaraderie among the attendees with attendees always “looking out” for each other.

From an operational standpoint the flow of the conference was superb with volunteers available at every step to ensure that time management was maintained.

I have never before come across such a motivated; enthusiastic and caring group – clearly who will achieve their goal – i.e. find a cure for PSC. It truly was a pleasure and honor to be associated with the PSC Partners organization and helping organize this conference in Pittsburgh.

* * * * * *  

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

In Denver:

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Denver Art Museum
www.denverartmuseum.org 

There are two buildings – one a fortress-like structure from Italian architect Gio Ponti, the other, a structure that resembles a titanium crystal with peaks and shards designed by Daniel Libeskind. Inside, find the world's greatest collection of Native American art and 68,000 other art objects, including works from European masters, Old West classics and phenomenal traveling exhibits, like Modern Masters (March 2-June 8, 2014). More Info

http://www.denver.org/Images/Upload/clyfford-still-museum.jpg

The Clyfford Still Museum
www.clyffordstillmuseum.org 

Clyfford Still, considered one of the most important painters of the 20th century, was among the first generation of Abstract Expressionist artists. The museum, which opened at the end of 2011, was founded to promote the late artist's work and legacy. More Info

Denver U.S. Mint

U.S. Mint
www.usmint.gov/mint_tours/index.cfm?action=StartReservation 

Learn how to make money! The Mint produces 50 million coins a day, each one stamped with a little "D" for Denver. Free tours show every step in the process of turning a dull, blank, metal slug into shiny pocket change. Advanced reservations required.

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History Colorado Center
www.historycoloradocenter.org 

The History Colorado Center, one of Denver’s newest cultural attractions, is designed to ignite imaginations of all ages about Colorado history through high-tech and hands-on exhibits, programs for children and adults, and special events. More Info

http://www.denver.org/Images/Upload/16th.jpg

16th Street Mall - Pedestrian Mall

Lined with 200 trees and 50,000 flowers, this festive, mile-long pedestrian promenade has 28 outdoor cafes and offers Denver's best people-watching. I.M. Pei designed the gray and pink granite pathway to resemble the pattern of a diamondback rattlesnake. Hop on the bus – they're free and stop on every corner. After dark, horse-drawn carriages clatter up and down the Mall. More Info

Denver Museum of Nature & Science

Denver Museum of Nature & Science
www.dmns.org 

The fourth largest museum in the U.S. is a maze filled with treasures of the earth – dinosaurs, dioramas, space exhibits, science experiments, a digital planetarium, IMAX theatre and touring shows, including Maya: Hidden Worlds Revealed (Feb. 14, 2014-Aug. 24, 2014). More Info

http://www.denver.org/Images/Upload/animals_elephant.jpeg

Denver Zoo
www.denverzoo.org 

Lions and tigers and bears – and so much more, on lovely grounds make this the fourth most popular zoo in America. Go underwater with polar bears at Northern Shores, or eyeball-to-eyeball with a gorilla in Primate Panorama. Predator Ridge recreates the plains of Africa with a pride of lions, while Tropical Discovery is rainforest teeming with crocodiles and gila monsters. The zoo's biggest new addition is Toyota Elephant Passage, a phenomenal 10-acre home for the Zoo's elephants, gibbons, rhinos and more, all in the heart of an Asian village. More Info

Within an hour from Denver:

Black Hawk

Central City & Black Hawk
www.cityofblackhawk.org 

These two old gold mining towns (once known as the "Richest Square Mile on Earth") have come alive with casino gambling. Two dozen casinos rock 24-7 with 10,000 slot machines, poker, black jack, roulette and craps. The surrounding hills are covered with abandoned gold mines, Victorian buildings and Old West history. Located 34 miles west of Denver. More Info

Georgetown Loop Railroad

Georgetown
www.georgetown-colorado.org 

Nestled in a steep mountain valley, the "Silver Queen" is one of Colorado's most elegant mining towns with 200 Victorian buildings. Ride the Georgetown Loop Railroad over a 100-foot high trestle to neighboring Silver Plume, tour historic homes and shop on the quaint Main Street that has been used in films featuring Clint Eastwood and John Denver. Located 42 miles west of Denver on I-70. More Info

Boulder

Boulder
www.bouldercoloradousa.com 

Home to the University of Colorado, Boulder has been described as the "the city nestled between the mountains and reality." A recent study pegged it as the "happiest" city in America. You'll find out why when you stroll past the shops, cafes and street performers on the Pearl Street Mall, or take a hike on the city's 200 miles of trails. Nearby attractions include the National Center for Atmospheric Research with a museum on weather and global warming, and towering Eldorado Canyon State Park, one of the most famous technical climbing centers in America. Boulder is 27 miles from Denver on Hwy. 36.More Info

Day trips:

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Pikes Peak Country and Colorado Springs

Pikes Peak Country is located 60 miles (97 km) south of Denver and features more than 40 attractions centered around 14,000-foot (4,267 m) high Pikes Peak and the city of Colorado Springs. Things to see include the Air Force Academy, one of three United States military colleges; the famous Broadmoor Resort with its lake and three golf courses; the Pro Rodeo Hall of Fame with its exhibits on this exciting professional sport; and Garden of the Gods which has gigantic 500-foot (152 m) high red sandstone rock monuments at the base of Pikes Peak.

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Rocky Mountain National Park

Located 71 miles (114 km) northwest of Denver, Rocky Mountain National Park features 400 square miles (1,036 sq km) of scenic beauty, including Trail Ridge Road, the highest continuous highway in the world crossing the Continental Divide at over two miles above sea level. The park has two information centers, hundreds of miles of hiking trails, tranquil lakes, waterfalls, wildlife and horseback riding. Estes Park is a resort town on the edge of the park with restaurants and shops. 

Get an in-depth look at Rocky Mountain National Park!

Click here for more resources.

2013 Conference Attendee Comments

My Conference Experience | Erik Loy (Teen PSCer)

 

My conference experience started the day before we left for Pittsburgh. That Thursday night, before we had planned to leave, we got a call from Cleveland Clinic saying that they had a potential donor for me.

However, I wasn’t told until later that I was the backup recipient. So as we left for the hospital, all the emotions seemed to hit me at once. When we got there, they put in an IV and started fluids, so we assumed the primary recipient hadn't panned out, and I was going to get the liver. We waited until 2:00 AM before they told us the primary recipient had accepted the organ. So we went home, got a few hours of sleep, and left for the conference.

My mind was all over the place on the way down, and even for most of the first day. The conference was like a vacation from the real world though. It was so nice that I could be tired and that no one would say anything if I went to my room and took a quick nap. Before Pittsburgh, I had never met another teen with PSC. I knew several older men with the disease and a few women, but being able to talk to other teens was so much fun. There were three of us and we never left each other's sides because we just connected so well. I made so many friendships I know will last forever. I definitely found a second family at the conference and I'm so happy I did because I know I can turn to them whenever I need support. The conference was one of the best experiences of my life, and I plan to go to many more.

 * * * * *

It’s Not Just About Having Something in Common
by Suzanna Donahue (PSCer)

It was with mixed emotions that I registered my husband and myself for the annual PSC Conference. It wasn’t too long after registering that I questioned this use of our limited funds. I (as true for most PSCers) had done an awful lot of research and figured there was little more to learn, despite others saying that they learn something new every year at this conference. However, I remained hopeful that even if the presentations proved to be a repetition of what I already knew, I could leave there with some small foundation of a social network that I knew I would need in the near future. The conference was in my backyard. Surely, I would meet others in the area who are also dealing with this disease.

Newcomers to the conference are often overwhelmed, and we were certainly not immune to that feeling. Thankfully, “mentors” were assigned to the newcomers and we left feeling like we had at least one person we knew and felt comfortable with. Next was the Welcome Dinner. An enormous ballroom was filled with tables and people – people who are dealing with PSC either as the patient, family member, caregiver, or friend. I sat there staring at all these people and thought in my best imitation of a three year old not getting her way, “I do NOT want to be a part of this group.” I didn’t want anything to do with this. I wanted to get out of Dodge.

I sat at my table filled with mostly 20 somethings (I’m 42), and listened in awe to their stories(everyone there has one) and how they are dealing with it with so much grace and humor. I didn’t feel much better about my lot in life that evening, but a seed of something had been planted.

The next day was filled with presentations, some of which were given to all attendees at breakfast, and some breakout sessions. We also had breakout groups of people with similar “positions,” if you will: caretakers, teen PSCers, post-transplant PSCers, etc. I could not easily sum up everything I learned at the presentations, but trust me when I say, you really do learn something new at these conferences despite all the research you may have done on your own.

I met so many people with so many different stories that held one common theme: We are all affected, in some way, by PSC. I worried about how this conference would affect our outlook. I was concerned about my husband being overwhelmed by the stories of other caregivers and had suggested he avoid the group (thankfully, we were talked out of that idea). I was concerned that I would see what my future held and would come out of there more depressed. Instead, we both left there with something we never expected: a family we never knew we had. It’s not just about the stories. It’s not just about having something in common (although that is a big part of it).

This disease can be very isolating, and it is comforting to know we are not alone in this battle. The fact is, these people are truly amazing and wonderful human beings. I came in feeling Overwhelmed and alone and left there feeling connected and inspired. And, honestly, I cannot imagine going to battle without these incredible people by my side.

 * * * * * 


Tribute

To Conference or Not to Conference?
By Sandi Pearlman, 2013 Conference Attendee

I wasn’t going to go. If you know me, you know that’s no small thing. I half expect when the vampires take my blood one of these days that I’ll get a call saying, “Um, you know, we’re wondering something. You see, our techs are finding all these little PSC Partners floating in your bloodstream like some kind of madcap chicken soup....” So, when I say I wasn’t going to go, even if you don’t know me, maybe you can appreciate the gravity of those words and feelings.

Why? Well, I wasn’t sure I had it in me, physically, emotionally or otherwise. I was just plain, old spent. I’d need to negotiate endless doctors arguments against leaving Clinic grounds/territory--I’m listed and rather ill--and I’d have to negotiate the terms of leaving and then I’d probably end up in the hospital upon return. Plus, how was I going to enjoy myself, run my sessions, do all I needed to do when I’m so far past empty that the red line gave up on the gauge and called out for pizza instead? But, pal, boy am I glad I went and here’s why: You all rock. We rock. PSCers are amazingly extraordinary people and stunningly wonderful in so many ways.

Whether eating pizza, going up to The Incline or just hanging around in the lobby, our group is restorative, loving, loud (really loud) and so connected even strangers know upon seeing us that we’re family. We share stories and secrets. Fears come out to see the light of day and we learn they’re not quite so scary after all. We hold the hands of people whom two days ago we didn’t even know but are now forever a part of our lives, inexplicably intertwined through this madness called PSC which only those touched by it can truly understand. We say we’re PSCers and caregivers, but we’re all caregivers. Not once did I look around at the conference and see somebody alone. Not once was somebody looking for a warm embrace unable to find it. And the camaraderie is evident, we miss each other, need each other, crave this world that restores us all in our sameness and our abilities to lose our inhibitions and just be. We scratch; we cry; we laugh; we vomit; we dance; we go through box after box of Kleenex and we love. Most of all, we love.

At the conference, it doesn’t matter if you’re 13 or 33, 40 or 75, we’re all the same, even in our differences because we choose, on a level not even our subconscious recognizes as decision making, to recognize each other. During sessions, we devour information and look to the experts to fill gaps in our knowledge or teach us something new. Out of the sessions, we sing (boy, do we ever) and we shop and we savor each moment because we know how fleeting they are. Those of us who normally sleep 18 hours a day or can’t get up off the couch are suddenly going out to get sandwiches at 2:00 a.m. because we can’t bear the thought of missing a moment. We literally exhaust ourselves for that one more second to spend together.

And goodbye is never easy. We know it’s not forever, that another conference will come around, but still it hurts. Tears flow and hearts break a little knowing that the next morning we won’t wake up and see those we’ve come to love and rely upon. But we know, too, that the invisible tether will hold strong. That we’ll connect via technology (shameless plug for PSC Partners Facebook), via telephone calls and visits and, of course, the next conference.

So, I thank you. Thank all of you. Because, you see, you’ve restored me. You’ve given me strength to take with me and memories to keep me laughing (anyone who missed Karaoke, please, don’t make that mistake again!). When I go into my next appointment, I’m not walking in alone. You’re there with me, holding my hand and whispering words of encouragement. And when the news isn’t good and I want to cry, your shoulders are ready for me to lean on. We’re never in this thing all alone because we have each other. My cells may say PSC Partners, but they also bear each of your names and I hold them close. They shelter me, comfort me and remind me that no matter what the war against PSC brings, that we’re all together in this fight, whatever it takes. We’re stronger than PSC. We’re stronger than anything thrown at us and together we’ll find a cure. You’ll save me and I’ll save you because, quite simply, that’s what family does.

* * * * * *

Here are some additional comments from past conference attendees:

  • To read "I Refuse to Miss One of These Gatherings" click here
  • To read "The Top Ten Reasons to Attend a PSC Partners Conference" click here.

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HELP US FIND A CURE FOR PSC: Please consider donating to or holding a fundraiser for our Road to a Cure annual campaign, as all donations go directly to support the mission of PSC Partners Seeking a Cure. For information, click here.

http://www.pscpartners.org/sites/default/files/images/donate_now.jpg

PSC PARTNERS MAILING LIST: If you aren’t already on our mailing list, please sign up now by clicking here to receive e-mail updates about the conference and other programs.

Thank you for your interest in attending the tenth anniversary 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, Meegan or Stacy at contactus@pscpartners.org