Annual Conferences

PSC Partners Seeking a Cure holds a conference in the spring of each year in conjunction with a major medical center. Usually held in April or early May, the conference draws patients and caregivers (spouses, partners, parents, siblings, and friends of PSC patients) to learn about the latest research on treatments, medications, procedures, and the disease’s outlook. There are support and discussion sessions with physicians and with other attendees.

Speakers at our conferences are leaders in the PSC world and they come from the US as well as international PSC treatment and research centers.

Time is also set aside for fun and entertainment. Many participants say the conference is life changing. Friendships are forged and attendees go back home with renewed energy to cope with PSC, both medically and emotionally.

Conference content from our five previous conferences is online at this site, under the Previous Annual Conferences tab; click here to go to the tab. Our newsletter, The Duct, also covers the conference in detail, generally in the Summer issue. Click here to go to the newsletter page.

Personal Stories

To read a light-hearted list of why you should attend an annual conference, click here.

I Refuse to Miss One of These Gatherings

It wasn't the presentations from medical professionals, or the breakout sessions, or the beautiful accommodations. They were all great.

Something else goes on with this group every year . . . much more than the joy that comes from renewing old friendships and seeing people whom we haven't seen since the last conference. It’s something that I can't easily describe.

Some wonderful spirit that comes from knowing that everyone else present, whether a patient or caregiver, is in the battle of their lives. Put aside the politics of health care reform, a phrase never uttered within earshot of me all weekend. Forget about the academic debates as to the true cause of PSC and which treatment appears to be the most promising. 



Yes, we were all there to learn, but we got so much more than book knowledge. I think one of the prime goals of every PSC patient is to just be normal. Sure we try to hide things and are all experts at disguising the fatigue, itching, GI problems, or replying to the "You don't look sick" comments. We know we're not normal now, and deep down we know that even after transplant, we're not normal and never will be, at least not in the way that society defines the term. It's quite a lonely feeling, and it's no wonder so many of us are treated for depression.

But when we're together, everyone is fighting the same enemy, everyone has similar issues, and so with over 200 people in the room, we actually are normal, if for but a weekend. Frankly I was feeling pretty crummy every day of the conference. The fatigue was crushing, I had little appetite, and it was tough to get out of bed each morning. Kathy was convinced I was going to pass out at any moment, poor thing! And so many people who read my blog and who were in attendance already knew that I was struggling and offered to help me with whatever my heart desired.

I met so many wonderful people who were at their first conference, just recently diagnosed, fearful, and who came away knowing that there are others out there fighting, too. Hope is there, and being together as a group is, well, a real damn great time. To me, there is nothing better than the dozens of hugs and heartfelt expressions of care and friendship among everyone in attendance. I don't know how one could attend and not come away with faith restored and with new friends that will be there for life.



You see the other reason people go to the PSC Partners conference is to restore hope. To see that people can have great lives while they're fighting this war. That people actually do get through transplants and go on to being energetic again, and in my case, more fit and better looking than ever before. 



This was Kathy's first conference, and I'm so grateful that she finally had the opportunity to go with me. Even when we got lost around New York and I took it all in stride, she remarked at how calm and peaceful I was. That was because I knew that we were bound for an experience that would be great for both of us, and nothing would put a damper on what we were about to experience hand in hand, side by side. Yes, she'll go next year with me, and I'm already pricing flights to Sacramento for us.



Sure, all weekend I was still sick and going through the normal recovery that comes from those periodic, rare, mysterious flare-ups of something unknown. But who doesn't get sick sometimes? All it took was a greeting from my old buddy Tim from North Carolina, or seeing my best transplant friend, Dave, again, and the cares and symptoms were dismissed from the table.



This group had that special spirit when it was small, and it's amazing that it has an even stronger passion and energy now in a group of over 200 attendees. That's a congratulations to Ricky Safer, the founder of PSC Partners, and also to too many other names to mention here who share that vision of being together in the fight, whatever it takes.



I finally started feeling better yesterday. I've actually worked two full days in a row, and I'm rapidly becoming more of a helper and less of a burden again to Jacqui. And I'm not asleep on the sofa ready for bed when Kathy gets home from work. The joy is back, aided in part by a group of people that will always hold a special place inside this old heart.


Tom B.

Absolutely fantastic!

The conference was absolutely fantastic! I am so glad I went and can’t wait to attend next year’s conference and bring my family along! What a group of friendly, welcoming and inspiring people! My only regret is that I didn’t attend a conference earlier!

Conference attendee 2010

A full schedule and time to socialize

I love that it’s a full schedule, but with time here and there to just socialize. That is healing in itself.

Conference attendee 2010

Outstanding!

The annual conference was outstanding. It was the first one I attended and will absolutely be in Sacramento next year. What we all learn from each other, in person, is priceless. Thanks for a very memorable and valuable experience.

Conference attendee 2010

One of the most important events of my life

This conference was probably one of the most important events of my life. I am so grateful that you created this foundation and have recruited such talented and accomplished volunteers to actualize its potential.

Conference attendee 2009

Felt empowered

The opportunity to hear directly from doctors that are working on this disease has inspired me to want to give more. It was also extremely inspiring to hear what they are working on and where the research is going. I was a first time attendee and this event left me feeling empowered. Also, the conference was run much more professionally than I expected for the cost. Great location and meals, overall extremely well run.

Conference attendee 2009

Great value of becoming more educated

I have to admit that the Sunday morning go-around with other attendees was particularly helpful to me. The sessions on Saturday were also very important and well done. Even though the material presented by the speakers on Saturday was at times difficult to hear, I know the great value of my becoming more educated about the disease and its ramifications for both my daughter and the rest of our family.

Conference attendee 2009