Our Next Annual Conference

PSCPartners 2010 Conference Agenda 

All conference events will take place at the Marriott Hartford Downtown (200 Columbus Boulevard, Hartford, Connecticut). Conference is in conjunction with the Liver Center at Yale University School of Medicine

 Click here to download the Agenda as a PDF.

Click here for our online registration form.

 Click here for our conference flyer. Please print copies and deliver the flyers to your gastroenterologist or hepatologist to display in his/her office. Note that the flyers are three to a page and need to be cut apart before distribution.

Thank You to Our 2010 Conference Sponsors!

Premier Platinum Sponsors: Abe and Rachel Gomel

Gold Sponsors:

The Liver Center at the Yale University School of Medicine
Jeff and Reggie Belmont
Don and Ricky Safer

Silver Sponsors: Ken and Patty Shepherd

If you’re interested in becoming a conference sponsor, please contact Ricky at contactus@pscpartners.org

Friday, May 14, 2010
10:30 a.m.	Pre-Conference Event: Brunch at Butler-McCook House, a Connecticut Landmark, at 396 Main Street
2-4 p.m.	Healthy Living Choices: An interactive intoduction to complementary therapies (come in casual or workout clothes)
5:30-7:30 p.m.	Registration and Welcome Dinner
Saturday, May 15, 2010
7:30 – 8:30 a.m.	Buffet Breakfast
8:30-8:35 a.m.	Opening remarks: Don and Ricky Safer, PSC Partners Seeking a Cure Foundation
8:35-8:45	Welcome/Meeting Objectives: Dr. James Boyer, Ensign Professor of Medicine, Emeritus Director, Liver Center, Department of Medicine, Yale University School of Medicine
8:45-9:05	Presentation 1: The PSC Diagnosis--Overview of PSC/Histology: Dr. Tamar Taddei, Assistant Professor, Section of Digestive Diseases, Transplantation Center, Yale University School of Medicine
9:05-9:25	Presentation 2: The Natural Course of PSC: Treatment and Managing Symptoms: Dr. Pramod Mistry, Chief, Pediatric Gastroenterology and Hepatology, Yale University School of Medicine
9:25-9:45	Presentation 3: The Overlap Between Inflammatory Bowel Disease and Primary Sclerosing Cholangitis: Dr. Judy Cho, Associate Professor of Medicine and Genetics, Director, Inflammatory Bowel Disease Center, Yale University School of Medicine
9:45-10:20	Question & Answer Panel: Moderator, Dr. John Polio, Connecticut Gastroenterology Associates, Hartford, CT, Associate Clinical Professor of Medicine, University of Connecticut, Senior Attending Staff, St. Francis Hospital and Medical Center, Yale University Liver Transplant Program; Panel: Drs. Boyer, Taddei, Mistry and Cho
10:20 – 10:40 a.m.	Break/Snacks
10:40 – 12:05 p.m.	Presentation 4: Overview of PSC Research: Dr. James Boyer
10:55-11:10	Presentation 5:Biology and Pathobiology of Cholangiocytes: The Key to Understanding PSC: Dr. Mario Strazzabosco, Professor and Director, Yale Liver Cancer Program, Yale University School of Medicine
11:10-11:25	Presentation 6: Results of PSC Genome Studies in Norway: Dr. Trine Folseraas: Norwegian PSC Center, Medical Department, Rikshospitalet, Oslo
11:25-11:35	Presentation 7: PSC Partners Seeking a Cure Grants Program: Dr. David Rhodes, Professor, Department of Horticulture and Landscape Architecture, Purdue University and PSC Partners Board Member, Chair of Scientific/Medical Advisory Committee and Dr. Don Safer, Clinical Professor, University of Colorado School of Dentistry and PSC Partners Scientific/Medical Advisory Committee Member
11:35-12:05	Question and Answer Panel: Moderator: Dr. John Polio, Panel: Drs. Boyer, Strazzabosco, Folseraas, Rhodes and Safer
12:05 – 1:15 p.m.	Lunch
1:15 – 1:35 p.m.	Presentation 8: How to Communicate With Your Physician (Questions and answers following): Dr. Tom Ullman, Director, Center for IBD and Associate Professor of Medicine, The Mount Sinai School of Medicine
1:45 – 3:50 p.m.	Breakout Sessions: Choose ONE speaker for each session. (See list below)
1:45-2:20	Session I
2:30-3:05	Session II
3:05-3:15	Break/Snacks
3:15-3:50	Session III
3:50 – 4:00 p.m.	Wrap-up: Don and Ricky Safer
6:30 – 9:00 p.m.	Banquet Dinner
Sunday, May 16, 2010
7:30 – 8:30 a.m.	Buffet Breakfast
8:30 – 9:15 a.m.	Open Forum
8:30-8:40	Update on Dr. Chapman’s Research: Ivor Sweigler, PSC UK Support Group
8:40-8:50	PSC Partners Foundation Financial Report: Deb Wente, Treasurer
8:50-9:15	Announcements and Foundation Updates
9:15-11:20 a.m.	Group Sessions in Breakout Rooms (Male PSCers/Female PSCers/Parents of pediatric PSCers/Parents of adult PSCers/Spouses and other caregivers of PSCers/Post-transplant PSCers/PSC teenagers/PSCers in their 20’s & 30’s)
10:15-10:35	Break/Snacks
11:30-12:30 p.m.	Open Forum Reconvenes
11:30-12:20	Feedback from Group Sessions
12:20-12:30	Closing Remarks: Don and Ricky Safer, PSC Partners Seeking a Cure Foundation

Choice of Breakout Speakers and Topics on Saturday Afternoon

Session 1 1:45-2:20 p.m.

• Special Topics for 20s/30s Females - Dr. Tamar Taddei, Assistant Professor, Section of Digestive Diseases, Transplantation Center, Yale University School of Medicine
• Special Topics for 20s/30s Males - Dr. Dwain Fehon, Assistant Professor, Department of Psychiatry, Yale University School of Medicine
• The Role of Good Nutrition in PSC - Erin Paice, Certified Dietician, Registered Dietician-Nutritionist, Transplant Dietician, Nutrition Department, Hartford Hospital (Also Session 3)
• Surgical and Transplant Options for PSC - Dr. David Hull, Director of Transplantation, Hartford Hospital
• Pediatric and Adolescent PSC - Dr. Karan Emerick, Associate Professor of Pediatrics, University of Connecticut School of Medicine, Director of Hepatology, Division of Pediatric Digestive Diseases, Connecticut Children’s Medical Center
• The Transplant Experience: Interactive Session for Post-Transplant PSCers - Dr. Aubrey Goldstein, PSC Partners Scientific/Medical Advisory Committee Member
• Treatment Issues for PSC Patients with IBD - Dr. Deborah Proctor, Professor of Medicine, Medical Director, Inflammatory Bowel Disease Program, Yale University School of Medicine (Also Session 2)

Session 2 2:30-3:05 p.m.

• Know Your Rights: Health Insurance - Jennifer Jaff, Esq., Advocacy for Patients with Chronic Illness, Inc. and Crohn’s Patient
• Oncologic Complications of PSC - Dr. Mario Strazzabosco, Professor and Director, Yale Liver Cancer Program, Yale University School of Medicine (Also Session 3)
• Future Plans for the Norwegian Research Center - Dr. Trine Folseraas, Norwegian PSC Center, Medical Department, Rikshospitalet, Oslo
• Endoscopic Diagnosis and Management of PSC - Dr. Priya Jamidar, Professor of Medicine, Associate Section Chief, Director of Endoscopy, Section of Digestive Diseases, Yale University School of Medicine (Also Session 3)
• Patient Perspective on the Transplant Experience/From Pre-Transplant through Post-Transplant - Panel of PSC Partners Post-Transplant PSC Patients
• Coping with PSC for PSC Patients - Dr. Dwain Fehon, Assistant Professor, Department of Psychiatry, Yale University School of Medicine
• Treatment Issues for PSC Patients with IBD - Dr. Deborah Proctor (Also Session 1)

Session 3  3:15-3:50 p.m

• Know Your Rights: Employment - Jennifer Jaff, Esq., Advocacy for Patients with Chronic Illness, Inc., and Crohn’s Patient
• Adult and Pediatric PSC: Who and When to Transplant (MELD Score Advocacy) - Dr. Pramod Mistry, Chief, Pediatric Gastroenterology and Hepatology, Yale University School of Medicine and  Dr. Tamar Taddei, Assistant Professor, Section of Digestive Diseases , Transplantation Center, Yale University School of Medicine
• The Role of Good Nutrition in PSC - Erin Paice (Also Session 1)
• Endoscopic Diagnosis and Management of PSC - Dr. Priya Jamidar (Also Session 2)
• Oncologic Complications of PSC - Dr. Mario Strazzabosco  (Also Session 2)
• Living with PSC: Stories of Inspiration - Panel of PSC Patients
• Coping with PSC for Caregivers - Dr. Dwain Fehon, Assistant Professor, Department of Psychiatry, Yale University School of Medicine

Click here to fill out the conference registration form now.  Pay standard fees if you register on or before April 12. After April 12, there is a late fee.

2010 Conference Information

PRE-CONFERENCE ACTIVITIES FOR FRIDAY, MAY 14 We hope that you’ll consider arriving in Hartford by Thursday evening to participate in our pre-conference activities. Last year, more than half of the conference attendees came early, and they greatly appreciated the chance to get acquainted (and re-acquainted) with the other participants before the official start of the conference.

BRUNCH at 10:30 a.m.: Please join us for an informal brunch at the Butler-McCook House to meet fellow PSCers and caregivers. The Butler-McCook House (1782) is the oldest surviving building in Hartford, and it portrays the life of four generations of the Butler and Mc Cook families with its original furnishings, art and antique collections. Its beautiful restored Victorian garden will be the setting for our brunch, if the weather cooperates! The Butler-Mc Cook House is a short five block walk from the Marriott at 396 Main Street (www.ctlandmarks.org). $10 fee per person.

HEALTHY LIVING CHOICES: AN INTERACTIVE INTRODUCTION TO COMPLEMENTARY THERAPIES from 2-4 P.M. (Held at the Marriott) This is a new program in 2010 which is targeted for both PSCers and caregivers. Come in casual or workout clothes and be ready for some new experiences. This is your chance to try stress-relieving activities such as meditation, yoga, Tai Chi, etc., and also to learn how to incorporate exercise into your life, no matter what stage of the disease you may be experiencing presently.

SUGGESTED INDIVIDUAL ACTIVITIES IN YOUR FREE TIME BETWEEN THE BRUNCH AND THE AFTERNOON SESSION

Attractions within walking distance from the Marriott: Wadsworth Atheneum Museum of Art, Old State House, Science Center, Bushnell Park

Attractions further afield: Mark Twain House and Museum, Harriet Beecher Stowe Center. Go to www.hartfordmarriott.com and click on the Visitor’s Guide for more information.

CONFERENCE FEES

Standard: (on or before April 12) $150 per person, $280 per couple, $140 for each additional family member or caregiver Late: (after April 12) $170 per person, $320 per couple, $160 for each additional family member or caregiver Friday pre-conference brunch: $10 per person

Note: We try to keep our registration fees as low as possible, so that more people can afford to attend the conference. Please note that PSC Partners and our 2010 conference sponsors subsidize a significant portion of your conference costs. (In 2009, the registration fee per person covered only half the cost for each attendee; the rest was covered by PSC Partners and our generous conference sponsors.)

Payment

There are two ways to pay for the conference, PayPal or by check, and information is included in the online registration form.

IMPORTANT HOTEL INFORMATION

We are pleased to offer a room block at the luxurious Marriott Hartford Downtown (200 Columbus Boulevard). www.hartfordmarriott.com The special PSC Partners group rate is $119 plus tax for a double room. This discounted rate is also available to our attendees three days before (May 11-13) and three days after the event (May 16-18).

The reserved room block will be allocated on a first-come, first-served basis. The cutoff date for the discounted group rate is APRIL 23. The special group rate will expire when all allotted rooms have been reserved or on April 23, whichever comes first. After April 23, the discounted group rate will only be offered depending on availability, so it is strongly advised that you make reservations as soon as possible to take advantage of the group rate. Individual cancellation will be allowed with no penalty if notice is received 24 hours prior to the arrival day.

To reserve your room: By phone: Call toll free 866 373-9806 and request the “PSC Partners Seeking a Cure Annual Conference” group block.

Online:

Register here if you want two double beds: http://www.marriott.com/hotels/travel/bdldt?groupCode=pscpscd&app=resvlink&fromDate=5/13/10&toDate=5/16/10

Register here if you want one king bed: http://www.marriott.com/hotels/travel/bdldt?groupCode=pscpsca&app=resvlink&fromDate=5/13/10&toDate=5/16/10

All conference events will take place at the Marriott.

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ONLINE REGISTRATION FORM: Please fill out our online registration form. If you have any questions, send an email to Ricky Safer at contactus@pscpartners.org or to Reggie Belmont at ctpsc@hotmail.com.

Transportation to Hartford

We strongly recommend that PSCers and caregivers attending the 2010 conference in Hartford, CT fly directly to Bradley International Airport in Windsor Locks, CT, 20 miles north of Hartford. – Jeff and Reggie Belmont

Bradley is a full-service airport with connecting flights thoughout the country. Bradley is serviced by Air Canada, American, Continental, Delta, Northwest, Southwest, United and US Airways as well as several commuter lines. For more information, go to www.bradleyairport.com and click on “flights” to get a list of airlines, schedules, and prices.

Ground Transportation from Bradley Airport to Marriott Hartford Downtown

Bus: Connecticut Transit “Bradley Flyer” operates frequent bus service from 4:10 a.m. to 10:45 p.m. to downtown Hartford for $1.25 per person. There are bus stops on the lower level of each concourse and the 30-minute ride will take passengers to the Old State House in downtown Hartford, a three-block walk to the Hartford Marriott. For schedules and route map see www.cttransit.com

Taxi: Taxis are always available, the fee is approximately $40.

Rental Cars: All the major rental car agencies have counters at the airport. Enterprise is offering PSCers a special $99 three-day weekend rental for a mid-sized car. (Once the conference starts, you won’t need a car, because everything takes place at the Hartford Marriott Downtown.)

Directions: From Bradley International Airport, follow signs for I-91South. Proceed on I-91 South for 12 miles. Take Exit 29A/Capitol Area onto Whitehead Hwy. Take first exit (on right) to Columbus Blvd. At the light, turn right; the hotel is on the right.

Other Transportation to Hartford

Train: There is AMTRAK train service to Hartford from Penn Station, New York City and Boston South Station. A transfer in New Haven is required. AMTRAK arrives at Union Station (Shuttle Stop 8) where you board the free Star Shuttle to the Marriott Hotel (Shuttle Stop 1). See details and a map below.

Bus: Greyhound Bus Lines and Peter Pan Bus lines offer service to Hartford and arrive at Union Station (Shuttle Stop 8) where you board the Free Star Shuttle to the Marriott Hotel (Shuttle Stop 1).

For information on transportation options, go to www.hartford.com and click on Get Around.

Driving: Hartford is an easy drive from all of the New England States and New York. It lies at the juncture of I-91 and I-84 on the west bank of the Connecticut River.

From Logan Airport, Boston to Hartford

Directions by Car:

Exit airport onto I-90 West, Mass Pike, 58.2 mi. to exit 9 (I-84) at Sturbridge MA. Follow signs for New York City and Hartford, CT.

Merge onto I-84 for 42.8 mi. to exit 54. At exit 54, on left, toward downtown Hartford 0.4 mi. Merge onto CT-2 West, 0.4 mi. Turn left (South) onto Columbus Blvd., 0.1 mi. Hotel is at 200 Columbus Blvd.

Estimated travel time: 1 hour 38 minutes (103 miles)

Rental Cars:

Logan is serviced by all of the rental car agencies. Costs begin at around $50/day.

Enterprise Rent-A-Car: 617-561-4488

www.enterprise.com

Hertz Car Rental: 617-569-7272

www.hertz.com

National Car Rental: 888-826-6890

www.nationalcar.com

Budget Rent-A-Car: 617-497-3733

www.budget.com

Avis Rent-A-Car: 617-247-0613

www.avis.com

Alamo Car Rental: 800-327-9633

www.goalamo.com

Dollar Car Rental: 800-800-4000

www.dollar.com

From Downtown Boston to Hartford

By Bus:

Estimated travel time: Approximately 2 hours

Deluxe Coach Bus - $15 pp (departs 177 Huntington Ave., Boston-arrives 369 Capitol Ave., Hartford) www.bostondeluxe.com.

Greyhound – Multiple departures, $24 pp, www.greyhound.com 1-800-231-2222

Peter Pan Bus Co. - Multiple departures, $27 pp, www.peterpanbus.com 1-800-343-9999

By Train:

Estimated travel time: 3 hours

Amtrak trains depart South Station in Boston. You must transfer to Hartford either in New Haven, CT or Springfield, MA.

Costs range in price, but start at $26/each way

www.amtrak.com, 1-800-USA-RAIL

From train station in Hartford to Marriott: about 5 minutes travel time

From New York Airports to Hartford

Approximate drive times (assuming no traffic delays) to Hartford:

La Guardia (LGA): 1¾ hrs.

John F. Kennedy International (JFK): 2 hrs.

Newark International (EWR): 2¼ hrs, but offers most public transportation options to Hartford. See below.

Rental Cars: All of the New York airports are fully serviced by all of the major car rental agencies. The best deals we found were from www.hotwire.com (1-866-468-9473).  There is a "no cancellation policy" with this site but rates are typically the lowest. We are sure these prices might change, so hopefully these are still good (or you can find a better deal). Other options for renting a car:

La Guardia Airport: $62/day

JFK Airport: $53/day

Newark Airport: $42/day

Limousine Service: This will be the most expensive option.  Below are a few choices:

Connecticut Limo runs vans and buses from all three airports. It collects passengers from the terminals and makes several stops in Connecticut. CT Limo costs about $93 pp, arrives at Hartford Holiday Inn, a 10 min. taxi ride to the Marriott: www.ctlimo.com 1-800-472-LIMO (1-800-472-5460). CT Limo has phones in all of the baggage claim areas for passenger pick up.

Premier Limo: (Private, chauffeured): www.premierlimo.net Base rate $224 from LaGuardia 1-860-659-8600

Hy's Limo: (Private, chauffeured): $250 for private chauffeured town car, www.hyslimo.com – 1-800-255-LIMO (1-800-255-6331)

GETTING TO HARTFORD FROM NEWARK AIRPORT BY TRAIN OR BUS

Only Newark Airport has direct bus and train service to Hartford.

Amtrak train:

Five trains per day run from Newark to Hartford (Cost: $40-$65 pp). Duration: 3.0-3.5 hours. Travelers may have to change trains at Penn Station or New Haven, CT.

For more information on train options, visit www.amtrak.com or call 1-800-USA-RAIL (1-800-872-7245).

Bus transportation:

Greyhound runs 7 buses per day from Newark to Hartford ($16-$32 pp), discounts available with advance purchases. Duration of trip: 4-5 hours. For more information, visit www.greyhound.com or call 1-800-231-2222.

Peter Pan Bus Co. also serves Newark Airport. For information, contact: www.peterpanbus.com or call 1-800-343-9999

GETTING TO HARTFORD FROM MANHATTAN BY TRAIN OR BUS

In order to access buses or trains from JFK or La Guardia, travelers must go to either Penn Station or Grand Central Terminal in Manhattan.

Amtrak runs fifteen trains per day which depart from New York’s Penn Station to Hartford ($16-32 pp), with discounts available with advance purchases. Duration of trip: 3 hours. www.amtrak.com

Metro North www.mta.info operates numerous commuter trains from Grand Central Terminal to New Haven, CT where one can change trains for Union Station, Hartford.

Greyhound Bus www.greyhound.com runs 15 trains during the day from New York Penn Station to Hartford ($16-32 each way), with discounts available with advance purchases. Duration of trip: 21/2 -3 hours. 1-800-231-2222

Check Peter Pan Bus www.peterpanbus.com or call 1-800-343-9999.

Getting Around Hartford

Hartford is an easy city to navigate on foot, and the Marriott Hartford is located in the heart of downtown. If you want to ride, there are taxis for hire, public buses and a free Star Shuttle bus that operates in a continuous loop, 10-12 minutes, around the city from 7 am to 11 p.m. Monday through Friday and 3 p.m. to 11 p.m. on Saturday. www.hartford.com

Parking

If you arrive by car, there are several parking options.

Hotel parking is offered at a discounted rate for PSC Partners: $23 per day for valet parking. This fee is charged to your room. The rate for self-parking is $19 per day. Parking ticket must be stamped at the front desk and paid when exiting the parking lot.

The Hartford Transit District offers reduced parking fees for the event, $5 per day, at their lot on Spruce Street, across from Union Station which is serviced by the Star Shuttle (Stop 8). It is an open lot with an around-the-clock attendant. The Authority would prefer all-day parking. People using this lot will need a coupon every time they take their car out of the lot. Additional coupons will be available at the conference.

Many thanks to Scott Malat of New York and Nicola Parry of Boston who pulled together the travel options for their respective cities.

✁

 

 $5 Parking

PSC Partners Seeking a Cure

6th Annual International Conference

Greater Hartford Transit Authority - One Union Place

This coupon entitles the bearer to park at the Spruce Street Parking facility across from Union Station - corner of Spruce St and Asylum Ave., at the rate of $5 per 24-hour day.

If you would like to automatically receive all updates about the next conference, please sign up for our online mailing list.

Thank you for attending the sixth 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.

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Personal Story

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.)