THE DUCT
A Monthly Newsletter for the PSC Community
May 2022
Whether you're a patient, caregiver, researcher, clinician, industry representative, or another important member of the PSC community, your attendance at the 2022 Annual PSC Partners Conference is vital.

"This year’s Conference is different in that we are asking researchers and participants to help develop the research agenda. Everyone's voice is extremely important," say this year's Conference Co-hosts
Dr. Josh Korzenik and Dr. Dan Pratt.
We're excited to have close to 40 speakers and moderators from around the world presenting at this year's Annual PSC Partners Conference. Don't miss it. Register below!
Conference Cost

  • Patients and Caregivers: Suggested Registration Fee - $25
  • Fee for patients and caregivers who can’t cover the suggested fee - $0
  • Corporate and Community Sponsors - $0
  • Academic Researchers and Clinicians - $0
  • Non-Sponsor Industry Attendees - $150
Your Voice Is More Important Than Ever At This Year's Conference
Here's Why...
PATIENTS AND CAREGIVERS

Your perspective, PSC experience, and day-to-day knowledge are extremely valuable. During this Conference, there are numerous opportunities for you to share your viewpoint with researchers, clinicians, and industry representatives, including:

  • Meet the Professor sessions with PSC experts from Canada, Europe, and the U.S., including those focused on pediatric PSC

  • Think Tanks with PSC experts and community members to discuss the International Collaborative Research Network (ICRN), the agenda for the future of PSC research, and more

  • Numerous interesting and interactive PSC learning sessions, including Q and A periods, with premier, international PSC experts

  • Networking Lounges in which one-on-one and group discussions are encouraged
RESEARCHERS, CLINICIANS, & INDUSTRY REPS
During this year's Conference, we have numerous offerings for researchers, clinicians, and industry representatives, including opportunities to learn, share your voices, and connect with peers and patients/caregivers. Don't miss:


  • Breakout sessions for researchers and clinicians discussing issues such as health inequalities in PSC and the PSC Partners Research Grants program

  • Opportunities to connect with PSC patients and caregivers to hear from them directly about their PSC experiences

  • Networking Lounges in which one-on-one and group discussions are encouraged
While nobody is required to speak, your feedback is vital in the effort to
find treatments and a cure for PSC!

Additionally, we welcome everyone's feedback following the Conference.
Email contactus@pscpartners.org.
DON'T MISS THE NEXT WEBINAR IN OUR
PRE-CONFERENCE SERIES
DID YOU CATCH THE FIRST TWO WEBINARS IN OUR
PRE-CONFERENCE SERIES?
Click the graphics below to view the videos.
NEWCOMER ORIENTATION
THE BASICS OF PSC
TEENS...DID YOU THINK WE FORGOT ABOUT YOU?
NEVER!
We've planned lots of networking, fun, exciting events for our 13-21-year-old PSC community members
Teen and young adult gatherings have always been a highlight of our annual conferences. This year's Conference is no different! It may be virtual, but it will still be fun. Take a look at everything we're offering this group of 13 to 21-year-old PSC patients, siblings, and family members.

DUE TO THE SENSITIVE NATURE OF THE SUBJECT MATTER,
NOBODY UNDER 13 IS ALLOWED AT THE CONFERENCE.

NOBODY OVER 21 IS ALLOWED AT THE TEEN/YOUNG ADULT EVENTS,
EXCEPT DESIGNATED MODERATORS.

Thank you for understanding.

TEENS/YOUNG ADULTS MUST BE REGISTERED FOR THE CONFERENCE TO ATTEND THE FOLLOWING EVENTS:

Thursday, June 2nd
6-7 p.m. MT - Teen and Young Adult Social Event
If you're 21 years or younger, join this casual and fun session to get to know peers in a low-key setting while learning useful communications skills. The session is moderated by Lisa LaCroix, a multi-talented friend of PSC Partners. Lisa is an actress, podcaster, and TikTok influencer.

Friday, June 3rd
2-3 p.m. MT - Games-Games-Games
Join your peers, ages 13-21, for an hour of virtual games. Whether it's Pictionary, Kahoot, Teen Apples-to-Apples, or another virtual game, this is sure to be a fun time.

Saturday, June 4th
2:45-4 p.m. MT - Graffiti Workshop
This dynamic experience is an online graffiti lesson and a hands-on graffiti masterclass with a renowned street artist and educator. There will be moments of interaction throughout, time for Q and A with the artist, and an informal, fun tone.
This is for teens and young adults ages 13-21. PRE-REGISTRATION IS NECESSARY FOR THIS EVENT, WITH A BOX TO MARK ON THE REGISTRATION FORM. Did you forget to sign up when you registered? No problem. Send an email at contactus@pscpartners.org, or call 303-771-5227.

Sunday, June 5th
11 a.m.-Noon MT - Teen PSCer Peer Group Gathering
During this time, teens and young adult PSC patients, ages 13-21, will gather to chat in a relaxed forum moderated by young adult PSC patients. It's a great way for kids in this age group to garner support from peers who truly understand. THIS GATHERING IS STRICTLY FOR PSC PATIENTS AND POST-TRANSPLANT PSC PATIENTS.

Thursday, June 2nd-Sunday, June 5th
Teen and Young Adult Networking Lounge
During our in-person conferences, we always designate a room just for this group to chat, relax, and have fun with others their same age. This year's hangout room is virtual. It will be open late and monitored by young adult PSCers who have been in the community for a while. Teens and young adults, ages 13-21, are encouraged to visit the room and invite others to join them.

We understand that the experience of PSC for teens and young adults is unique, and we hope that the above events will reflect that reality and help to foster a supportive community through both topical dialogue and fun activities. Additionally, we are confident that many of our education sessions will be of interest to this group, and attendees of all ages (over 13) are welcome and strongly encouraged to attend. In fact, the voices of young folks will be extremely helpful during the interactive sessions, including Meet the Professor and Think Tank groups where we need to hear from patients and caregivers. 
NEED A MENTOR?
REQUEST ONE ON THE REGISTRATION FORM

HAVE A DESIRE TO HELP SOMEONE IN YOUR PEER GROUP? SIGN UP TO BE A MENTOR!
The PSC Partners Mentor Program provides much-needed support for people whose lives are impacted by PSC. If you have attended at least one PSC Partners Conference and want to give back to the community by becoming a mentor, you can request to be a mentor and make a big difference in someone's life. If you are in need of support from a community member who truly understands, ask to be matched with a mentor. Simply mark your interest when completing the Conference registration form. If you forgot to do that, or would like more information about this program, visit the Mentor Program page on our website. 

We have numerous opportunities for mentors and mentees to connect at the Conference to get to know one another, share stories, provide support, and more. Join today!
New Scientific Findings Point to Role of Contaminated Bile in the Onset of PSC: 
A Discussion with Espen Melum, MD, PhD, Norwegian PSC Research Center
In episode 32 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Espen Melum, Norwegian PSC Research Center, about a new discovery in PSC research. Dr. Melum and his colleagues have discovered antigens that activate T cells, or MAIT cells, that are present in a number of PSC patients participating in the study. These findings point to the role of contaminated bile in the onset of PSC.

"I am optimistic. When it comes to these kinds of studies, you never know what concepts they will drive into and which will be the relevant one," says Dr. Melum. "I think it’s very important that there is a broad level of studies looking into different aspects of understanding the disease"
Dr. Melum will be one of the presenters at upcoming 2022 Annual PSC Partners Conference. He will be part of the Meet the Professor panel on Friday, June 3, 10:40-11:10 a.m., MT. Bring you questions!
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Independent Media Producer, Director, and PSC Patient Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. Topics include patient stories, latest research updates from PSC experts, collaborations that are necessary to find better treatments and a cure, and more. This podcast has it all!

Living with PSC can also be found wherever you download your podcasts.
Support the 2022 Annual PSC Partners Conference by
BECOMING A CORPORATE OR COMMUNITY SPONSOR
We rely on the support of corporate and community sponsors for our Conferences, including the upcoming 2022 Annual PSC Partners virtual Conference. Won't you help?

For more information, check out PSC Partners Executive Director Meegan Carey's video at right, or contact us via email or phone, contactus@pscpartners.org, 303-771-5227.

Carey says, "We have several new and unique opportunities for both corporate and community sponsors. Your sponsorship is critical to support our PSC community!"
Fred, Why are You Coming to the Conference?
Each month, we highlight videos we think will be of interest to our community. Check out this message from the former Chair of the PSC Partners Board of Directors and current member Fred Sabernick.


Welcome to Sandi's
Circle
Sandi's Top Ten Reasons to Attend the
PSC Partners Annual Conference

  1. Know You're Not Alone
  2. Experience Joy and Hope
  3. Become Informed
  4. Be a Part of the "In" Crowd (instead of always being the one who is different)
  5. Scratch, Itch, Nap in Peace
  6. Make Lifelong Friends
  7. Get Practical Tips to Improve Your Daily Life
  8. Find the Meaning: Learn how to make a difference in your own life and other PSCers' lives, if you so choose
  9. Be with People Your Age Who Understand
  10. Put an Actual Face to All Your Facebook Friends

Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her.
In this space, we share words of encouragement from Sandi and others.

If you have something to add to Sandi's Circle, send it to contactus@pscpartners.org.

Due to space limitations, not all submissions can be added, but we invite everyone to use this space to encourage folks in the PSC community.
PICK UP AN EXCLUSIVE 2022 CONFERENCE MUG, & REMIND FOLKS, "YOU'RE ON MUTE!"
Visit our online shop to grab a limited edition coffee mug just in time for the 2022 Annual PSC Partners Conference. Not only will you look super cool while you're enjoying a beverage during this virtual event, it also doubles as a reminder to folks, "YOU'RE ON MUTE!" The mug comes in several colors, and two sizes. The Conference logo is also on a water bottle.
Delivery times can be slow, so order soon if you want the mug to arrive in time for the Conference.
This is an awareness-raiser, not a fundraiser.
Our Mission: The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
(303) 771-5227
6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111