PSC Partners Seeking a Cure holds a conference in the spring of each year in conjunction with a major medical center. Usually held in late June, 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.
- Learn more about our upcoming conference.
- Take a look at the material and media from our Previous Conferences.
- Previous additions of our newsletters The Duct, also cover the conference in detail, generally in the Summer issue.
2017 Attendee Video Testimonials
2017 Attendee Stories
As seen on Facebook:
- “I just want to say, this weekend was one of the best experiences of my life, no lie. I am not usually comfortable meeting new people and I haven’t traveled alone in many years, but I can honestly say I have never felt more comfortable! You guys are phenomenal. I am almost at a loss for words. So welcoming, so loving, and so incredibly genuine are a few of the words I would use to describe you. I knew the support from the FB page was there, but it was so much more intense in person than I could have ever imagined. The speakers were amazing, the accommodations perfect, and the company I kept the past 4 days just blew me away. PSC’ers and their families are, without a doubt, the strongest, most incredible people I have ever had the pleasure of meeting. You ALL demonstrated such love for one another! I explained it to my family as like being with family, only better because we all “get it,” where sometimes, as hard as they try, your family just can’t understand the magnitude of what we deal(t) with. For you to recognize and include our angels was also very moving, and I sincerely appreciate that. This was a weekend I will never forget, and I look forward to attending many, many more! I can’t wait to get started with the support group, and look forward to introducing many more people to the fold. Thank you for your love and support. I had an incredible time!”
- “My husband and I attended the conference for the first time this past weekend. Our son was diagnosed in 1999 and transplanted in 2005 but we had never heard of this organization or the conferences until a few weeks ago. We are so grateful we learned about PSC Partners and attended the conference!! We were hesitant to go at first because we thought it might be “too much” and honestly worried it would be a real “downer”. But we discovered it was truly the opposite! We learned so much and met such wonderful people. Before this we had never met another person or family dealing with PSC. Now we don’t feel so alone and isolated. In fact we feel encouraged and supported. Thank you all!”
As seen on post conference surveys:
- “The teens embraced my teenage son who is the PSCer and it was an amazing experience for him. Keep doing what you are doing for the teens…it is unmatched! My son and I were first timers and he was very reluctant to attend but is 100% onboard for next year. We checked the dates and the conference is the day after he graduates from high school. He informed me that he wants to attend the conference next year even though he knows he will miss all the graduation parties with his friends that weekend. That, in itself, says it all!”
- “Amazing experience! Can’t wait for the next one and anything in between!”
- “The latest information/research provided was extremely helpful and appreciated, but connecting with other PSC families/caregivers was incredibly significant for us. We had never met any other PSC families before this conference and we have been in the PSC world for 18 years. We cannot overemphasize the importance and value of meeting other PSCers and PSC family members. We are incredibly grateful we learned about PSC Partners a few weeks ago and were able to attend this conference. The encouragement, support, camaraderie and hope we received was beyond our expectations!”
- “I couldn’t get over how friendly and welcoming everyone was to us. Everyone was so genuine and wanted to hear your story. It made me feel like I found someone who could really understand what I was going through and felt about PSC.”
- “My husband and I felt there was a wide array of pertinent topics to choose from that were applicable and valuable. Surpassed our expectations.”
- “The experience of the weekend is helping me construct a better framework for my role as a supportive caregiver. Specifically, there are a number of key action items to work on. Most of these items were not even on my radar when we arrived on Thursday! The opportunity to listen to each of those with whom we had time to meet with was a very valuable experience indeed!”
- “As a first time attendee, we were overwhelmed and amazed by the openness of everyone. There was a genuine love and caring for all. Truly an amazing experience. You are an incredible organization that I appreciate so much!”
- “What a terrific experience….Knowledge is power!”
- “Made new friends and met the nicest people ever, a community that I so needed to help me get through this and realize that I am not alone and there is hope.”
2016 Attendee Stories
Here are some post conference comments and articles from 2016 conference first-time attendees:
There’s a certain comfort that comes with being surrounded by other people who just “get it.” At the PSC Partners Conference in June, that comfort was everywhere: in our smiles, our tears, our laughter, our embraces. This year was my first PSC Partners Conference. Before arriving, my husband was one of only a couple PSCers I’d ever met, and I’d never known another partner of a PSCer. By the time we left New Haven, I’d gotten to know dozens of both. Hearing their stories and sharing ours left me feeling more understood than I ever have in the year since my husband was listed for transplant.
My heart felt bigger, and so did my brain! At the sessions led by physicians and researchers from Yale and IPSCSG, I finally got my questions answered about interpreting lab results and now I actually understand what happens during an ERCP.
But the most exciting thing to learn about was the future of PSC research and the journey toward a cure. It was impossible not to feel the sense of hope in the room as we heard from the brilliant minds working on a breakthrough. And to know that PSC Partners is contributing to that work with the data we collect in the Patient Registry and the funds we raise for grants made it even more gratifying.
See you in Cleveland!
I was first diagnosed with PSC in 2010. Shortly after being diagnosed, I discovered PSC Partners through the PSC Partners Facebook page. Over the years, I have posted questions, shared updates, and virtually “met” other PSC’ers through the Facebook community, but I never had a chance to personally attend the annual conference until this year. As the conference approached, I was excited for me to have the opportunity to meet other PSC’ers and for my wife to meet other PSC caregivers/spouses.
While my conference nametag with its red dot to signify that I was a “first-time” attendee suggested otherwise, I felt like I was walking into a room of old friends when I showed up on the first morning of the conference. Before arriving in New Haven, I had only met one other PSC patient in-person, but now, as I looked across the room, I saw so many familiar faces from the PSC Partners Facebook group. It may have been the first time we were meeting in person, but in so many ways it felt like we had known each other for so much longer.
My conference experience was incredibly positive. Having time to spend with my peer group of 20-30 year-old male PSC patients was the highlight of my weekend. For the first time, I met other young men who were living with my disease. It was striking how similar our experiences had been. I finally found people who could relate to some of the things I hate most about PSC and the things that make me worry most about the future. As a 20-something year-old male, my friends can’t relate to what I’ve been through as a PSC patient, but in this room, there were 10 other men who understood being hospitalized, being scoped, and being itchy!
I left the conference with many new friends and a list of questions for my hepatologist. Maybe more importantly, I left the conference with hope for the future of PSC research thanks to the efforts of the International PSC Study Group. Now that I have been to my first conference, I wish I could have attended years ago. My wife and I are already looking forward to next year’s conference.
Matt and Cindy McMurtry
We are parents of a PSC’er and looked forward to our first PSC Partners Conference with anticipation. We found that as the conference progressed we grew increasingly inspired and uplifted. The meeting had a sign board for participants to write “What does PSC mean to me” and the response that resonated with us was People Seeking a Cure! This was a strong takeaway message to us. PSC’ers, families, friends and caregivers are all determined and optimistic to find a cure. This was also evident in the researchers and others attending the conference who were open to communicate with those who are affected. Also I learned how generous in caring and sharing this community feels. If you have a desire to take action, confirm your current treatment or explore a different course of action, this conference offers education in current options. Connecting with this phenomenal community keeps us motivated to keep moving forward, dealing with the problems and challenges head on with determination and passion.
Best decision I ever made …
…was to attend the PSC Partners Conference. If you or someone in your family is faced with a diagnosis of PSC, I would strongly encourage you to attend the PSC Partners Conference, held annually in various locations in the United States. It will be in Cleveland Ohio, next year and I already know that I am going! My son was diagnosed with PSC in April of 2016, and someone told me about the conference. I immediately made plans to attend the conference in New Haven, Connecticut which was held June 24-26th, 2016. Beforehand, I read the agenda on their website, and saw that there were specialists from around the world giving presentations on various aspects of PSC. I flew across the country with my son, to attend this and it was the best decision I have ever made. I knew what doctors were going to be there, and I knew the subject of the conference, but I didn’t know I would meet so many wonderful people. From the beginning, I felt welcomed when I signed up as they have a mentoring program, so I was able to connect with a Mom who like me, has a son with PSC. When we arrived at the conference she was looking for me, and welcomed us, and introduced us to other families who are experiencing the same thing as me.
Initially, I was overwhelmed by the presentations as there were a lot of medical terms that I wasn’t familiar with, but the doctors were happy to answer all of our questions. By the end of the conference, I found myself quite comfortable with a lot of the terms, and gained an incredible amount of knowledge about the disease. I learned that this disease is very different for every person, and that you must strive to remain positive. It helped me considerably to know how much research is going on around the world and to meet the very doctors who are at the forefront of this research. I left the conference with immeasurable hope and optimism, which I certainly didn’t have prior to attending.
Throughout the conference, they discussed being part of a family, and after attending the conference I can attest to that feeling. I left there knowing I have the love and support of a whole bunch of amazing people who are passionate about finding a cure, and people who care about me and my son. I felt buoyed by the warmth and compassion from each and every person I met, and that feeling will stay with me throughout this journey because we truly are “together in this fight, whatever it takes”!
My sister, Patti, has had PSC for 22 years and struggles with feelings of isolation and loneliness of having a rare disease, that is unknown and misunderstood by her family, friends and many doctors. She has wanted to attend the PSC conference for many years and has not had the courage to do so, until this year. We were both hesitant, feeling it may be too awkward, costly and simply not worth the time and effort. We couldn’t have been more wrong. The moment we stepped onto the elevator at the hotel, we met the chairman of the board, who was so gracious and kind and assured us we would feel welcomed and supported. This warmth and acceptance continued throughout the weekend, meeting many involved with this special group. We couldn’t believe the information that was shared among doctors from around the world who are doing research for treatments and cures of this tragic disease. The telling and humorous speeches from the staff and fellow caregivers and PSCers, were enlightening and entertaining. The bonds created with this “new family” were overwhelming and a gift we didn’t expect. I was surprised with the knowledge I gained and the stories of others’ challenges and successes. PSC is so labile and different for each patient, making it difficult to speak of in the “outside world”. Others just don’t understand the symptoms, the lack of successful treatments and the fact that there is no cure. It was comforting to be in a room full of those that needed no explanation. We could relax and be free, speaking of our feelings and fears, in the presence of others who are in same situation. The food was excellent too!
There was a surprisingly odd peace felt amongst all the tragedies. We felt less isolated and more hopeful, though things can be rough and scary. There were shared tears, yet more smiles, hugs and laughs. It really helped Patti validate her feelings and suffering, realizing that she is not alone in this long battle. She didn’t have to explain the disease to others and have them look at her with blank stares in misunderstanding or pity. It was priceless for her to be able to freely discuss the symptoms she has without feeling like a complainer. Everyone understood. Patti felt so loved by all and it warmed my heart to see her spirit shine so brightly! She felt compassion for many people who have encountered difficult trials and poor outcomes, as compared to her journey so far. I think this allows the mind to rest knowing it will be ok, even if the worst were to happen. Patti is so brave and meeting others with such bravery was inspiring.
I would encourage anyone who has PSC, any family member or friend, to attend the next conference! It was a weekend that we will never forget and will always cherish. A special time of bonding with loved ones. As a caregiver, I feel more empowered to support my sister and possibly others I met. My only regret is that we didn’t attend the previous years, but will be attending next year and God willing, the years to come. Bless Ricky and Don Safer for starting this incredible support group and welcoming us into their PSC family with such giving hearts and open arms.
I was diagnosed with PSC just over 10 years ago. I have been part of the PSC Partners Facebook community for several years but this was my first conference. I had seen postings from many others about what a wonderful experience they are. This year’s wasn’t far from home and I decided that I was going. When I arrived the night before, I was almost overwhelmed (in a good way!) by how welcoming and friendly everyone was. Up until that moment, I had never met anyone else with PSC. Here was an extremely diverse group of people and we all had PSC in common. Explanations weren’t necessary;they all understood. I made many new friends and was able to meet some of the people I knew only through Facebook.
The researchers’ presentations were impressive. The audience was able to understand the “Big Picture” in each, even if some of the details were a bit over our heads. Everyone was excited that so many new areas are being investigated and by the enthusiasm of the researchers in their search for a treatment or cure.
The end came much too quickly, but I am excited about next year. It truly does feel like a family! I always thought that was a bit cliché, but there’s no better way to describe it. It was such a wonderful feeling knowing that I’m not alone in facing this, that there are many others. I left with a number of new friends and lots of new information from both the researchers and fellow PSCers. I hope that I was able to help some of the others, especially those newly diagnosed, by sharing my own PSC experience. I found the group’s optimism, enthusiasm, and determination to be infectious. More than ever, I want to do whatever I can to help in the fight against PSC!
I will admit, I had mixed emotions about attending our first PSC Conference. My husband was diagnosed about three years ago. We didn’t understand because he was young and healthy. So like most people do now, we researched through the internet. We found this great group, PSC Partners on Facebook and figured OK we are not alone!
We arrived at the conference early, and it was as if we were attending a family reunion. Everyone was so warm and friendly and they all had a story to share. For the first time we were surrounded by people who understood what PSC is. Some stories happy and some with a not so happy ending. It scared me but comforted me at the same time. I learned so much from everyone and they all answered questions I never thought I needed answers to. I really enjoyed the separated groups for discussion. As a caregiver, there are questions I have that I wouldn’t ask in front of my husband. I felt so comfortable opening up, it was like an amazing three day therapy session!
I am extremely thankful for this organization and this amazing conference. This is something we will look forward to for the years to come. This was a real eye opener and with more and more efforts we will reach so many others so they don’t have to suffer in silence. Thank you so much PSC Partners!
Our first PSC conference this year was an amazing and eye opening experience. The second we walked out of the elevator to the mezzanine we were smothered with love and felt like family within minutes of arriving. As we met more and more participants, friendships were formed quickly. Deb and I were able to split up to attend 4 breakout sessions. I feel the greatest sessions were the 2 group sessions with similar PSCers of my age group and pre-transplant. I was able to validate common symptoms and learn more about what to expect should things get worse and I have an attack. An instant brotherhood was formed. The experience was scary and exciting at the same time. We are inspired to spread the word more to our doctors and other doctors in the area. The entire PSC group is such an amazing and fun group and we look forward to many more conferences.
My First PSC Conference
On a beautiful day in November I received a diagnosis of a condition that I had never heard of until a few days before: PSC. Like many others, it was found by abnormal lab results. Needless to say, I was devastated and terrified. Researching information on the internet only made me feel more frightened and alone.
Thankfully my next click led me to PSC Partners and to Ricky. Within hours of making contact I received a beautiful e-mail from her and within a day or two we had a long conversation by phone – to be repeated by others. This happened despite her very busy schedule. I then made contact with Rachel, Joanne and other wonderful people. Thanks to their encouragement, Larry and I attended our first conference: the 2016 conference in New Haven
What are our two biggest take-aways?
- We were immediately welcomed to the PSC Partners Family with hugs and smiles. Words cannot express how that made us both feel and how grateful we both are. We met many people like us: PSC’ers who were diagnosed via lab results but who have no symptoms. We of course are the lucky ones and hopefully will stay that way. We of course also met PSC’ers experiencing symptoms, those who have had liver transplants, their family members who were also so welcoming and supportive and family members of those who did not survive. The kindness and friendship of all did so much for us. We have maintained e-mail contact with several people already. We would of course like to especially thank our mentors, Allan and Karen Luks. Their support via e-mail before we attended, the weekend with them and friendship that is continuing now means more than we could say.
- The lectures and breakout sessions: the doctors and professors could not have been kinder, compassionate and more informative. One doctor even took the time to review my lab work and MRCP results and validate what my doctor was doing for me. I know that he professionally and diplomatically suggested that others seek second opinions when he was asked. Meeting researchers from the international community was an added bonus. A take-away from the peer group was the excellent suggestion to make an appointment with the doctors at a major PSC Center to begin a relationship now — when I am healthy – and establish that relationship between my doctor and that center.
There is actually a third and even more important take-away: I may have PSC but PSC DOES NOT HAVE ME!!
Hope to see you all in Cleveland!! Thank you all for everything.
2014 Attendee Stories
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.
* * * * * *
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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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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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!