PSC Partners is grateful to all our conference presenters for providing their slides from past annual conferences. To review presentations, photos and videos from previous conferences, follow the links below:
- 2017 Conference
(with Cleveland Clinic Institute of Surgery and Digestive Diseases, Cleveland, OH)
- 2016 Conference
(With Yale Liver Center and Yale School of Medicine, New Haven, CT)
- 2015 Conference
(With Baylor University Medical Center, Dallas, TX)
- 2014 Conference
(With University of Colorado Hospital, Denver, CO)
- 2013 Conference
(With UMPC, Pittsburgh, PA)
- 2012 Conference
(With Mayo Clinic, Rochester, MN)
- 2011 Conference
(With UC Davis School of Medicine, Sacramento, CA)
- 2010 Conference
(With The Liver Center of Yale University, Hartford, CT)
- 2009 Conference
(With Northwestern University School of Medicine, Chicago, IL)
- 2008 Conference
(With the Mayo Clinic, Jacksonville, FL)
- 2007 Conference
(With University of Colorado Health Sciences Center, Denver, CO)
- 2006 Conference
(With UPMC, Pittsburgh, PA)
- 2005 Conference
(With University of Colorado Health Sciences Center, Denver, CO)
Here are some post conference comments and articles from 2014 conference attendees:
“This was my first time at the PSC Partners conference. I did not know what to expect, but I was very happy to finally meet not just one other person with PSC but many, many more. I was assigned a mentor who walked me through what to expect and this helped ease my anxiety. I met so many great people who are able to identify with what I have been through. I felt like I instantly gained a second family. I will definitely be going back next year!”
“I especially loved the willingness of people to talk to each other. I came alone-but wasn’t alone. I was delighted to meet others who are also dealing with what I’ve been dealing with and see that they are dealing and coping.”
“What I liked most was the opportunity to be with such an amazing ‘family’ of PSCers. Caregivers and others all dedicated to the cause. Feeling up to date on tests and treatment possibilities as well as an understanding of what may be causing the disease and possible predictors of progression. Really, having a weekend where everyone understands and is in the same boat is the most amazing part of it all.”
“I came away with so much more knowledge, more hope, and a feeling of a whole new family.”
Ten years. Ten years and we came full circle, right back to where it all started. Ten years ago I stepped off an elevator in Denver never having met another person with PSC. The first person I saw was Ricky Safer. She saw my nametag, gave me a huge hug, and I haven’t been alone on my journey since then. Two days later, I left with a handful of friends that would become some of the most important in my life, with a better understanding of what my life could hold in store, and without the fear that I had brought with me from home.
In the intervening years, I’ve had most of the members of my family accompany me at some point or another. I’ve added to that list of friends. Unfortunately, I’ve subtracted from that list of friends as well. I’ve learned more and retained more than most physicians about our common enemy. I’ve been well. I’ve been very sick. I’ve crisscrossed the country to each and every conference, knowing that I would be hearing much of the same information again.
So why keep coming back? Those people… my friends. They’re not your average, everyday, run of the mill people. They are extraordinary in so many ways. They’ve been through cholangitis, pancreatitis, colectomies, and transplants and they keep punching back. They are motivated and determined and dedicated. They are giving and caring. They’ve shown up at my hospital bed. They’ve inspired me. They are the reason that I will return year after year until I sit one day and hear one of our presenters say that no one else will ever have to shoulder this burden again.
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My husband and I first attended in 2009, four years after I was diagnosed with PSC. As a nurse I have been to many medical conferences, and I had no idea what to expect from the PSC conference. I thought I knew everything I needed to know about it. I was mostly looking to meet others with the disease, and not expecting much else. I also wanted to talk to someone who had already had a transplant. So, I am very happy to say that I met many people with PSC and got to compare stories, was able to talk to someone who had already been transplanted, but I also learned a lot about what was going on in the world of PSC, such as research and nutrition.
I now know that every year I will learn something new. This year, among other new information, I came home with notes from the breakout session on “Bone Health in PSC” and immediately compared Dr. Micol Rothman’s calcium and vitamin D recommendations with the doses I was taking – and found that my dose was right on.
Now that I am post liver transplant, I not only shared my experience with those who wanted to know “what it will be like”, but as I spend time in my small group of post-transplantees, I have learned that our experiences continue to be very different from each other’s. In 2009 I was surprised to realize how different everyone’s experiences with PSC were, even though we all had the same diagnosis. And now I know that after transplant our experiences continue to be very different and we are able to offer each other a lot of support and talk through issues.
We love participating in the conferences, you never just attend! This conference is like a family reunion every year!!
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My son (a PSCer) and I were first-timers at the conference and had no idea what to expect, and more to the point whether our investment of time and money would pay off. I can honestly say that within three hours of reaching the hotel we knew we’d made the right decision and that we were part of something very special. Mike Pearlman ‘adopted’ us while we were checking in at the hotel and, along with several other late arrivals, took us to Garcia’s to meet the crowd. He was a great ambassador for PSC Partners Seeking a Cure – and what a wonderful person! The people we met that first evening will be friends for life, as will all the other incredible individuals we met during the conference.
It’s hard to describe why the conference is so special to both those suffering with this awful disease, and their caregivers, but I’ll give it a go. The best description I can give is that it’s like joining a huge family – a special type of family where every single person is living through, and enduring, the same pain and suffering – be it physical or emotional, in fact usually both. It’s a few rare days where you don’t have to explain yourself, apologize for the tears, or anything else for that matter – you are accepted unconditionally.
I wasn’t sure how my son would react to being in this environment; he is an analytical type of person – happier with logic than emotion. Imagine my surprise when almost immediately he embraced the atmosphere and was more comfortable than I could ever have hoped, or dreamed. To say he got a great deal out of the conference is an understatement; even though he has researched and studied his disease, he still learned a great deal from the many presentations. More importantly he understood for the first time that he was no longer alone with his disease, he had a support group of close new friends and a wider network of friends he may not know yet, but who will be there for him, if and when he needs them through the PSC forums on Facebook.
For my part, in my role of caregiver, the conference furthered my understanding of the disease and helped me realize that PSCers can lead full lives, and that in spite of everything they never give up. I saw people many times worse off than my son; I saw and chatted with fathers and mothers with daughters and sons, brothers and sisters supporting each other, and I saw best friends supporting best friends. I spoke to women planning their next child, even though it would have to be after a transplant; I met teenagers who had endured one, or even two transplants fighting the disease with strength, fortitude, humor and grace. Most of all, I witnessed great courage.
I was humbled by the experience, honoured to be a part of it, and amazed at the dedication and commitment of Ricky Safer, her husband Don and the Partners Seeking a Cure team.
What else can I say except that we are now truly part of the PSC family and look forward to being instrumental in finding a cure and, of course, seeing everyone in Dallas next year.
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The best second family a girl could ever have
My first conference was back in 2010. I went with my mom, dad and my brother Nicklas. I was twenty years old at the time but in my head, my mental status, I was about 10. There were a lot of big words, sentences and big emotions that I didn’t fully understand. Mainly due to the fact that my brother – the PSCer in my family – hasn’t really had any major problems up until recently.
What made the trip worthwhile were the people I met and they are the reason I’ve been coming back every year – except one – since. This group of people I have met through the conferences have become my second family. I am the person I am today – largely – thanks of them.
Now, I’m still that insecure 10 year old when it comes to some parts of PSC – with all the big words and all the grown up talk about different things. But I know now for a fact that you can ask your PSC sisters and brothers or moms and dads anything and they will do their best to answer it. No question is too stupid. For example, if you ask “Why is Don Safer always wearing bowties?” we’d just answer “Well there’s a long and a short answer. The long one would take days to explain and the short answer is he was born that way!”
This year’s conference was my fourth and because of everything that’s been going on the last five or six months I wasn’t sure if I would be able – emotionally – to come to Denver. But then I remembered that we’re all in this fight together and as long as you have your PSC family you’ll never walk alone!