THE DUCT
A Monthly Newsletter for the PSC Community
August 2021
RAISE YOUR HANDS
if you're excited for the 2022 Annual PSC Partners Conference
June 2-5, 2022
Boston, MA USA
There are things you can do NOW to get ready for next year's meeting. See article below.
The 2022 PSC Partners Conference is Right Around the Corner
HERE ARE SOME THINGS YOU CAN DO NOW
TO GET READY FOR THE JUNE 2022 EVENT!
  • Mark Your Calendars
We all know that time flies. 2022 will be here before we know it. Mark your calendars for the 2022 Conference, in conjunction with Brigham and Women's Hospital and Massachusetts General Hospital, June 2-5, 2022, Boston, MA. Hotel information will be coming soon.

  • Participate in ROADMAP Initiative Webinars
The ROADMAP Initiative series is designed to build a foundation of knowledge and collaboration in preparation for the PSC Partners 2022 Conference. By attending these sessions, we develop collective knowledge ensuring that our entire community is up to speed on topics important to all of us. Click here for more information about upcoming sessions and to view recordings of past ROADMAP Initiative webinars. PSC Partners put together a document with a glossary of terms and background information about each of these five aspects of PSC. Download document here.

  • Watch Recordings of Presentations from the 2020/2021 Virtual Conferences and 2019 Conference with Mayo Clinic
In lieu of our 2020 and 2021 Conferences, PSC Partners launched a series of webinars. View webinars on our website. Also, catch up on what we learned at our 2019 conference, in conjunction with Mayo Clinic, Rochester, MN. Click here for recordings and links to slide presentations.

  • Sign Up to Volunteer
We rely on volunteers to help us with many aspects of our annual conferences. If you are ready, willing, and able to help us, visit our PSC Partners 2022 Conference webpage and complete the volunteer form. You can also send an email to contacus@pscpartners.org. Thanks!

  • Sign Up for Mentor Program
During the conference, we have several opportunities for Mentors and Mentees to connect. If you have been to at least one conference and would like to be a mentor, register now. We can match you at any time. Wouldn't it be great to get to know your mentee prior to the conference, and then see one another in person in Boston? Fun! Click here to sign up at a Mentor. If you would like to be matched with a mentor, send an email to contactus@pscpartners.org.

  • Attend ZoomRooms and Reach Out to Friends
We haven't been together in person for awhile. Let's reconnect before Boston, so we can get over the event jitters before the gathering. One great way to connect with friends old and new is to attend a ZoomRoom. These peer-to-peer gatherings are a safe way to catch up with and support others in the community. Check our EVENTS page for the schedule. Also, why not call, facetime, email, or message a friend you haven't heard from since the last conference? Let them know you plan to travel to Boston, and see if they are coming, too!
Boston: An Emerging Hub for PSC Research
This article was originally printed in the Viaduct, a publication sent to the 1,900 PSC Partners Registry participants. If you have PSC and haven’t joined the Registry, please consider joining. 


In June 2022, PSC Partners will be holding its patient/caregiver conference in Boston, Massachusetts, a city that has gained special meaning for the PSC community with the recent establishment of the Resnek Family Center for PSC Research, a unique, PSC-focused research center in the United States.

The Resnek Center is part of Harvard's Brigham and Women's Hospital (BWH) and was established with a generous gift from Barbara and Frank Resnek, who have a family member with PSC. When the Resneks were searching for information about PSC treatments, they became discouraged by the limited treatment options available – until they talked to Dr. Joshua Korzenik and his research team at Harvard University. Dr. Korzenik, a member of the PSC Partners Scientific/Medical Advisory Committee (SMAC), is the director of Harvard's Brigham and Women's Hospital Crohn's and Colitis Center and an assistant professor at Harvard Medical School.
Dr. Korzenik is a thought leader in inflammatory bowel disease (IBD) research, and his leading-edge work gave the Resneks hope that his team could tackle PSC with the same innovative approach. BWH announced the launch of the Resnek Family Center in November 2019, with Dr. Korzenik at the helm as director. He continues as director of the Crohn's and Colitis Center, as well, which is a natural pairing of research interests, since about three-quarters of PSC patients also have IBD.

The Resnek Family Center's primary goal is to develop PSC therapies, and its vision includes establishing "a robust research pipeline" for those therapies. Current areas of investigation include genes, viruses, bacteria, metabolites, vascular causes, and environmental triggers.

The Center's team of clinical investigators and scientists have expertise in gastroenterology, neuroscience, immunology, pathology, and translational medicine. Their goal is "to improve understanding and diagnosis of PSC, build an expansive collection of tissue samples to analyze the disease, and identify existing treatments that could work for PSC."

Dr. Korzenik, principal investigator of an ongoing PSC dietary study, among many other PSC studies, is a Harvard alumnus, earning his bachelor's degree there before completing his medical degree from Albert Einstein College of Medicine in the Bronx, New York. His residency was at Beth Israel Deaconess Hospital, and he completed his fellowship in gastroenterology and clinical epidemiology at Yale University School of Medicine Hospital. He has authored or co-authored numerous scientific papers and has earned awards for his compassionate care as a clinician.
Dr. Korzenik, along with Dr. Dan Pratt of Harvard Medical School and Massachusetts General Hospital (MGH), will be hosting the PSC Partners annual conference, June 2-5, 2022, in Boston. Dr. Pratt is an assistant professor of medicine at Harvard and serves MGH as clinical director of liver transplantation and director of the Autoimmune and Cholestatic Liver Center. Conference speakers will include experts from both institutions.

More details about the conference and related hotel arrangements will be released in the coming months. Watch for announcements on the PSC Partners website and social media pages, as well as in mailings from the Registry and PSC Partners.

One of Boston's more aspirational nicknames is, "The Hub of the Universe," or simply, "The Hub," a name coined by 19th-century poet and physician Oliver Wendall Holmes in a humorous article. When it comes to PSC research, however, the aspiration is quickly becoming a realization.

Join us in "The Hub" next year!
Donate and/or Register Today
THERE'S STILL MORE THAN A MONTH LEFT TO SUPPORT WALK83.01 FOR PSC
Did you know that, for every $30,000 raised during WALK83.01 for PSC, we can fund a full year of a research project? It's true! So far, we've raised enough to fund a full, two-year project, and we're well on our way to funding a year of another project. Amazing! This event runs through September 30, so there's still plenty of time to register as a participant and/or send in your support.

Together, we are creating a world where a PSC diagnosis comes with a cure!

DID YOU MISS THE LAST WEBINAR IN OUR
ROADMAP INITIATIVE SERIES?
PSC Partners put together a document with a glossary of terms and background information about each of these five aspects of PSC. Download document here.

Mark calendars for the next two ROADMAP Initiative webinars:

Wednesday, September 29, 6-7:30 p.m., MT
ROADMAP Initiative Webinar Research 201
The PSC Research Landscape: Now and Into the Future
Identifying Research Questions

Tuesday, October 26, 6-7:30 p.m. MT
ROADMAP Initiative Webinar Research 301
The PSC Research Landscape: Now and Into the Future
Charting a Path Forward

Registration available soon. Watch social media and check EVENTS page for link.
This was printed in last month's edition of The Duct.
We have received so much interest in this series, however,
that we decided to reprint this important information.
What is the ROADMAP Initiative Series &
Why Should You Participate?
We're so glad you asked!
We know our ROADMAP Initiative is new. Please take a minute to learn more about this important opportunity for YOU to get involved in the search for treatments and a cure for PSC.

What is the ROADMAP Initiative?
The ROADMAP series is designed to build a foundation of knowledge and collaboration in preparation for the PSC Partners 2022 Annual Meeting, June 2-5, 2022. We can’t do this without you!


What topics will the ROADMAP Initiative cover?
The webinars cover four topics: Patient-Reported Outcome Measures (PROMs), PSC Research, Drug Development, and Natural History. These key topics all lead towards PSC treatments and a cure. Get more information and view the recordings of the PROM and Kick-Off sessions here.

Who should participate in the ROADMAP Initiative?
Whether you're a PSC patient, post-transplant PSC patient, caregiver, clinician, or researcher, WE NEED YOUR VOICE! By sharing your PSC experience and hopes for the future, you will definitely be part of the team working to find effective treatments, and, finally, a cure for PSC. Additionally, attending educational sessions ensures that our entire community is up to speed on topics important to all of us. Every voice makes a difference.

How many sessions are there, and how often do these webinars occur?
We anticipate 2-3 webinars per topic. The webinars are scheduled about every six weeks. Keep an eye on the EVENTS Calendar on our website for future sessions. The webinars are divided into two sections. During the first half, experts disseminate information on the given topic. During the second half, attendees are divided into breakout rooms to discuss the topic and share thoughts/experiences. The second half is not recorded, but careful notes are taken. All comments are de-identified.

What happens if I miss a session?
While attendance is valuable for wide-spread, accurate distribution of information, and, more importantly, to ensure that your voice is added to the conversation, we understand that life sometimes gets in the way. The first half of all the ROADMAP Initiative sessions are recorded, so you can catch up on any subject anytime. For privacy reasons, we do not record the breakout room conversations, but we do take careful notes and aim to share a summary of these conversations with our community.  
Visit our YouTube channel to view past ROADMAP Initiative webinars and other PSC Partners videos.

Comments, questions, and suggestions can be sent via the brief survey at the bottom of the ROADMAP Initiative page of our website.

Together, we will find treatments and a cure for PSC!
A Patient's Perspective

A Discussion with
Ricky Safer, Founder and CEO of
PSC Partners Seeking a Cure
Last month, we were excited to post the 25th episode of our Living with PSC Podcast. It's a milestone for us, and we're very thankful to Media Producer Niall McKay for all of his amazing work on this project from day one! We're also grateful to everyone who shared their knowledge and perspectives with us over the years. Your time, effort, and honesty have made a real difference. Thank you!

This month, we decided to go back in time and revisit our very first episode. Host Niall McKay interviewed Ricky Safer, founder and CEO of PSC Partners Seeking a Cure, on April 4, 2018.

Ricky talks about the basics of PSC, her personal PSC diagnosis, why she started PSC Partners Seeking a Cure, the progress made since the non-profit's inception in 2005, and much more.
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer 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.
TAKE FIVE MINUTES TO REVIEW PSC PARTNERS, &
HELP US MAINTAIN OUR FIVE-STAR RATING!

Won't you help us keep our top rating for Great Nonprofits? The few minutes you take to add your review will make a world of difference for PSC Partners. Thanks, all!
REGISTER FOR AN UPCOMING ZOOMROOM
ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
ZoomRooms are not recorded, and are intended as safe, open forums.
ZoomRoom for Teens
(Ages 13-20)
August 31, 6 p.m. MT
ZoomRoom for Adult PSC Patients (18+)
September 21, 6 p.m. MT
ZoomRoom for Caregivers/ Spouses/Parents
October 13, 6 p.m. MT
Visit the EVENTS PAGE on our website for all scheduled
ZoomRooms and other events of interest to our community.

Help us keep our community informed by sending relevant events to PSC Partners! If you have an event you think should be added to the calendar, send information to contactus@pscpartners.org. Events will be screened for applicability to our community.
A picture of an arrow with the words Video Highlights
Each month, we highlight a video from the growing collection on our YouTube channel.

This month's selection is:

PSC Partners Patient Registry

Discover why the registry is so important, and how the de-identified information shared by patients is vital to the success of researchers searching for treatments and a cure for primary sclerosing cholangitis (PSC).

Click here for more information about the
Welcome to Sandi's
Circle
Sandi Pearlman Asks People to Follow the Yellow Brick Road
to the PSC Partners Annual Conference

In the book Sandi's Journey, Sandi Pearlman wrote about many things, including the importance of the PSC Partners Annual Conference.

"I'm asking you to follow the yellow brick road -- and no, that's not a jaundice joke -- because at the end is something even better than Oz; it's a place where you not only find that you possess a heart, a brain, and more courage than a den full of lions. It's a place where, in one weekend, a few short hours, you can change your life," said Sandi.

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.
FEDERAL EMPLOYEES...
Support PSC Partners via
Combined Federal Campaign!
If you are a federal employee, you can contribute to PSC Partners Seeking a Cure via the Combined Federal Campaign (CFC). Our CFC number is 79370.

CFC is the world's largest and most successful annual workplace charity campaign. It provides federal civilian, postal, and military donors the opportunity to make a difference in the lives of others. Won't you donate to PSC Partners via this campaign?

Together, we are creating a world where a PSC diagnosis comes with a cure!

Check Out These Two Events
of Interest to our Community
Register for Global Genes Rare Advocacy Summit, and get a 50% Discount with Code!
Join the Global Genes Rare Advocacy Summit for three interactive days of education, empowerment, and connection, September 27-29, 2021. Attendees will connect virtually to support one another and the rare community. View agenda here.

Global Genes is offering a special discount if you register by August 20. Use CODE: PASVIR50off21 to receive 50% off your virtual registration. 
5th Pediatric Autoimmune Liver Disease Symposium
Sept. 11th is the 5th Pediatric Autoimmune Liver Disease Symposium (PALDS). This conference is sponsored by the Center for Autoimmune Liver Disease (CALD) and the Autoimmune Liver disease Network for Kids (A-LiNK). It is for all individuals interested in or impacted by autoimmune hepatitis or primary sclerosing cholangitis (PSC).

There will be sessions on autoimmune liver disease in the (post)-COVID era, and more. Additionally, Keynote Speaker Stephen Harris will share his life's journey from rock n' roll to the medical landscape. View agenda here.

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