2015 CONFERENCE INFORMATION
We’re pleased to announce PSC Partners Seeking a Cure’s eleventh annual conference for PSCers and caregivers will take place in Dallas, Texas from April 24-26, 2015. The conference will be held at the Omni Mandalay Hotel in partnership with Baylor University Medical Center.
Check back soon for more details, and visit the Dallas Visitor's Bureau web site for more information about the Dallas area.
Here are some post conference comments and articles from 2014 conference attendees:
I came to my first conference out of fear.
I knew next to nothing about PSC (and nothing about PSC Partners). I only came because this unknown disease had put me in an ICU during the previous summer and that the three letter diagnosis I had been given – and mostly ignored – five years prior was starting to have an impact on my life, and I was afraid of what might happen next.
I had never met another soul with PSC.
I came to that first conference and spent three wonderful days with the friendliest, most welcoming group of people I could have ever imagined. An immeasurable power was generated within our group by simply coming together and confronting our demons, sharing our experiences, and supporting each other. It was a power strong enough to sustain me through dark times.
I left my first conference with a new family.
People sometimes ask me how anyone can enjoy themselves and have fun in a gathering of people whose common connection is a terrible disease. They don’t understand we are defined by so much more than PSC. To quote a friend, we may have the disease but the disease does not have us.
I come back to each annual conference for love.
Love of my PSC family, love of the good times that I know we will spend together. Love of the power that we share during each get together …the power of family.
Come to Dallas in 2015. Come meet your new family.
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With Ricky and Don's encouragement, my husband and I attended our first PSC Partners Seeking a Cure Conference this year (April 2014). Our 15 year old son was diagnosed with PSC & AIH in the spring of 2013. It has been a year of research and lots of doctor visits to learn more about these diseases. From the beginning, PSC Partners has been a very important source of information and support for our family. So when we learned about the conference, we knew right away we wanted (needed!) to attend.
My husband and I were immediately blown away by the sense of family. For the first time, we met other parents, caregivers, and PSCers who "get it". What an unbelievable feeling of support! Everyone was incredibly welcoming to us newbies. And the conference was impressively organized. Every detail had been thought of and attended to. I was most impressed by the knowledge & expertise of the presenters. We felt especially comforted to hear so many really smart people talk about what they are doing to help find a cure. We walked away from the weekend feeling supported and hopeful. Hopeful that one day every PSCer and the people who love them will live lives free of hardship and worry. We can't wait until next year's conference!
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I was a bit more than a little unsure about attending this year's conference. In years past, it has always been so helpful to learn more about PSC and the related health issues, hear about new research and emerging treatments, and meet others impacted by the disease. Because of Philip's death after his long battle with PSC, I wasn't sure exactly how I would react, how others would react, or what I would really get out of being at the conference. What I found, however, was that being at the conference this year meant so much more than any of the prior conferences I've attended.
While I was right that the presentations themselves didn't have nearly as much meaning for me personally this year, I fully realized that the conference is about so much more than 'just' learning about the disease. Above and beyond all of the education provided, being able to be with other people that "get it" was an experience beyond words. And it is that experience of community that will keep me coming back!
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I wish I had known about PSC Partners before my transplant. I was diagnosed with PSC when I was thirteen, put on the transplant list when I was fourteen, and got my transplant when I was fifteen. My parents and I went through the entire process of diagnosis, research, transplant, and recovery without knowing another PSC patient - male, female, young, old, or otherwise. It was scary not knowing what to expect but we made it through recovery with the support of family and friends. We celebrated my two-year anniversary post-transplant thinking we were done with PSC for good. Not so.
A couple months after that celebration I had a biopsy showing early-stage PSC in my new liver. I was devastated. I didn’t want to have to go through the whole process alone again. Luckily, a family friend had told us about PSC Partners and my parents decided to take me to the 2014 conference. It was a surreal moment heading back to my hotel room that first conference night, having finally met another person with PSC after five years of feeling alone. I have plenty of teenage transplant friends who had other diseases, but it was nice knowing that another teenager had gone through the same process as me. I had finally been delivered from the fear of being alone in the world of teenage PSC.
Looking back, it’s difficult to find the words that describe how I felt during the conference. The only expression that does my position justice is to say that I would definitely come again next year! I learned so much from the speakers, the small group discussions, and all the other people who participated. The conference changed my perception of chronic illness and quality of life. The most eye-opening moment I had that weekend was when I discovered that PSC differs so much between patients. I met people who have had many transplants because of recurrent PSC and some who have never been transplanted, people who have had countless complications and others who experience no symptoms whatsoever. I take comfort in the knowledge that I have a family of PSCers to lean on and I am beyond grateful that I don’t have to journey alone again.
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A strange thing happened when I walked into dinner the first night of the conference; I started to think I had met all of these people before.
Like many of you, I was hesitant as to whether I should attend the conference. Actually, no--I was gung-ho about going until about a month out, when I started to think, "should we be doing this? Is this what we should be spending our money on? We have two young boys with busy schedules, medical bills (of course), and a brand new dog--this is insane! And do I even want to think this much about my failing body when, for now, I feel kind of OK?"
In just the first day of the conference it was clear that the answer to all of these questions was, "Yes." After about the fifth or sixth time of asking my husband, "Don't I KNOW him/her??" (and learning that no, I didn't), I started to realize that these were just my people. Aside from looking like many people in the room (thanks to whatever awesome, defunct genetic connection there is for some of us Norwegians), I simply felt somehow connected to everyone. There was a palpable positive energy and camaraderie the entire weekend. And, by the end of the last day, strangers were friends, the overwhelmed were empowered and the hardened were tearing up. And everyone was laughing.
And now here I am. Still newly diagnosed (a little over a year ago), but fully armed with the knowledge of someone who has had PSC for decades--and writing this blurb for PSC Partners! You may relate to the feeling I had come to of, "well, I've read all I can, I've had all of my tests, no one can really tell me what to expect and when....so I guess I'll hang out and wait to get really sick." It felt helpless and endless. And I can honestly say that, since the conference, I don't feel that so heavily any more.
And, if you are wondering, the answer was also, "yes" to the question of whether my husband should take the time and money to come with me. I feel so grateful that both my mother and husband went, and in addition to all of the knowledge we gained from attending separate breakout sessions, I now have two people who, by the end of the weekend, really "got it" as much as anyone without PSC can. And that is priceless.
So I hope that you, too, find that all of the answers to your questions point to "yes" and that you go. I really think that you'll be glad that you did.
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