What happens when more than 300 PSCers and caregivers get together for a PSC Partners’ annual conference?
- We learn updated information about PSC and PSC research
- For three days, we have the chance to interact with top hepatologists and researchers and get our individual medical questions answered
- Patients no longer feel isolated
- Newcomers become absorbed into the PSC family
- Lifelong friendships are formed
- Patients return home feeling empowered by their experience
- There is a feeling of hope
This year’s wildly successful conference for patients and caregivers was held in New Haven, CT June 24-26 in collaboration with the Yale Liver Center /Yale School of Medicine and the International PSC Study Group (IPSCSG). We welcomed 302 attendees from 30 different states in the U.S. and 6 foreign countries: 25 spirited Canadians as well as participants from the UK, Australia, Sweden, Israel and Belize. The 141 first-time attendees were an eager group who were quickly absorbed into our international family. Our unique community spirit inspires everyone in attendance.
Thank you to Drs. James Boyer, Mario Strazzabosco, David Assis and Tom Karlsen, who spent a year planning with us and who had invited us to hold our conference back to back with the first United States’ meeting of the International PSC Study Group (IPSCSG). As Dr. Strazzabosco described the conference in the Yale New Haven Health press release: “PSC Partners is having a major impact on patient-level treatment of PSC, as well as in supporting PSC research. This meeting joining patients and international PSC researchers shows the intensity of efforts being devoted worldwide in several centers of excellence, as well as at Yale.”
Tim Wholey, a long-term conference attendee said: “This was the first conference where I felt that the medical community was finally beginning to make progress toward a medicine or medicines to help with symptoms or slowing down the progress of our disease. I know these meds are a long way off, but this conference felt like the Beginning of the End of PSC as we have known it! My hope has never been higher and we owe it to PSC Partners.”
Every year, when planning the conference weekend, we divide up the weekend activities so that attendees have ample opportunities to absorb the most updated information about all aspects of PSC and PSC research and also to meet other patients and caregivers to share experiences, concerns and questions. We listen intently to the excellent physician presentations, and when we spend time with our peers, we cry, we laugh, we offer advice and support each other.
The educational component of this year’s conference started on Friday afternoon, where attendees selected from nineteen breakout session choices with presentations by Yale experts on a wide variety of topics. There were four optional tracks for newly diagnosed patients, a transplant track, a pediatric track and a caring for you track. Each breakout session included plenty of time for a lively Q & A session. Click HERE to view the weekend agenda and the PowerPoint slides from each breakout session.
On Saturday, our educational opportunities were greatly enhanced by the unique collaboration with the IPSCSG (www.ipscsg.org), which is a group of the international PSC thought leaders from more than twenty countries. The group’s goal is to coordinate PSC research projects between leading institutions worldwide in order to prevent competition and redundancy in international research. The IPSCSG speakers gave outstanding presentations on their special PSC niche, providing an overall perspective on Understanding PSC, Managing PSC and PSC and the Future. To view video of these sessions, click HERE.
Sunday morning, together with members of the IPSCSG, we had the fantastic opportunity for the first time ever to hold a joint patient/researcher session. Patients and physicians shared experiences and opinions with each other as a first step in creating a Patient Reported Outcome tool (PRO) to gauge the quality of life of PSC patients and to clarify our unmet needs. This session ended up being a wonderful chance for patients, caregivers and physicians/researchers to talk to each other on a casual basis.
Here are post-conference comments from the conference collaborators: Drs. Boyer, Strazzabosco, Karlsen and Assis.
“It was a great privilege for all of us to organize this joint meeting at Yale. Many of our physicians and staff have commented on how meaningful it was for them to be able to interact with the patients.”
“It was a pleasure! What you are doing for our patients is amazing. I always tell my students that the bond and alliance between physicians and patients is what really matters in medicine…and I saw it happening.”
“I am so impressed with what you have built with PSC Partners. The combined session worked out really well. I am very happy we decided to do this.”
“I hope this is a new model for integrating researchers and patients/advocates, and PSC Partners.”
Throughout the weekend, we also provided time for important social interactions and entertainment. The conference started Friday morning with a get acquainted brunch at Anthony’s Ocean View. Mentors for first time attendees met their mentees at the brunch and sat together with their peer groups. Jeremy Burke gave a wonderful saxophone performance. At the Friday night dinner, attendees were seated by their geographic region. The Reunion Boyz, headed by PSCer Bryan Kimmelman, provided a lively improv performance after dinner. The Saturday night gala was a celebration, followed by our traditional karaoke.
Many attendees tell us every year that the time in their peer groups is the highlight of the weekend for them. This year, our 18 peer groups met at the Friday brunch, during Saturday lunch and the second half of Sunday morning. In each group, all topics and questions were welcomed. Attendees openly discussed the shared PSC issues that they all face. Most first time attendees have never met another PSCer before attending a conference, so it is an incredible feeling to be able to bond with a variety of other patients. Peer members shared their experiences, fears and hopes and relied on the advice of their peers. These groups passed on PSC Partners’ positive message that we all are more than our disease, and that we strive to live our lives as normally as possible.
None of this would have been possible without the generous support of our sponsors, both corporate and community. These combined sponsorships cover over half the cost for each and every attendee, so that we can keep our registration fees very reasonable. We send a huge thank you to our sponsors!
Thank you also to our dedicated community volunteers, over one hundred of whom volunteered during the weekend. Thank you to Joanne Hatchett, who organized all the volunteers, to Karen Pearlman, our professional photographer who documents every conference with her candid photos, to Kenny Gilbreath who took videos of the conference activities, Mike Pearlman who was ever-present, Fred Sabernick who provided IT support, and our local helpers Ed and Fran O’Neill and Craig and Ali Wiele. The list of volunteers is too long to list everyone, but please know how much we appreciate your help.
Here are some attendee comments taken from the post-conference evaluations.
“I enjoyed the lightheartedness even though we are dealing with such a serious disease. Humor is the best medicine!”
“It was wonderful to be here where the researchers were gathered. Hearing the medical interest in PSC gave me hope. It felt like the patient perspective was heard!”
“This was my first conference. I felt like I had a ‘mountain top’ experience with the joint session with the International PSC Study Group.”
“The speakers were excellent and accessible. The accessibility was to me, the best part. We talked to several of them and all were informative and willing to discuss a complex subject.”
“I appreciated the hope expressed for future studies, meds and patient outcomes.”
“I was reinvigorated by the energy at the conference this year.”
“I’ve never been surrounded by so many genuine and sincere people…better than any therapist!”
On Saturday night, we announced that our 2017 conference will be in held collaboration with the Cleveland Clinic on June 23-25. Conference activities will take place at the beautiful Intercontinental Hotel on the Cleveland Clinic campus. Please save the date, as we are already planning a special weekend. Whether you are a seasoned conference attendee or a first timer, I hope to see you in Cleveland!