THE DUCT
A Monthly Newsletter for the PSC Community
September 2022
“There is so much information in these 162 pages. It is a wealth of information for us to share over time with others and help update and inform physicians. What a gift to everyone living with PSC,” says PSC Partners Medical Science Liaison Joanne Hatchett.
Practice Guidance on
Primary Sclerosing Cholangitis (PSC)
and
Cholangiocarcinoma (CCA)
“When this document is formatted and formally published in the journal Hepatology, it will empower advocacy for the broader PSC community, and provide individuals with a valuable resource to take to their physicians while self-advocating for the screening and testing that are recommended,” says PSC Partners Director of Research Strategy Dr. Ruth-Anne Pai.
The long-awaited American Association for the Study of Liver Disease (AASLD) guidance for PSC and cholangiocarcinoma is out! See our statement regarding the newly published AASLD Guidance here.

Here are a few highlights from the newly updated guidance:

For Those Seeking a PSC Diagnosis

  • PSC should be considered in all patients with cholestasis, especially in the setting of IBD.
 
  • In patients with equivocal magnetic resonance imaging with cholangiopancreatography (MRI/MRCP) findings, a repeated high-quality MRI/MRCP should be performed for diagnostic purposes. Endoscopic retrograde cholangiopancreatography (ERCP) should be avoided for the diagnosis of PSC.
 
For Those With Suspected Small-duct PSC

  • In patients with suspected PSC and a normal, high-quality MRI/MRCP, liver biopsy should be considered to rule out small-duct PSC.

For Those Facing a Liver Transplant

  • Liver transplantation should be considered in all patients with PSC and complications of end-stage liver disease, recurrent cholangitis, intractable pruritus, or early-stage hepatobiliary cancers.
 
For Everyone Diagnosed with PSC

  • Nutritional assessments, including but not limited to biometrics and lipid-soluble vitamin levels, should be performed at PSC diagnosis and yearly thereafter with nutritional intervention and vitamin supplementation as needed.

  • Bone density examinations should be performed to exclude osteopenia or osteoporosis at diagnosis and at 2–3 year intervals thereafter based on risk factors.
 
For Those with Pediatric PSC

  • Colon cancer surveillance should begin at age 15 years in patients with PSC and IBD (every 1-2 years). In patients with PSC in whom IBD is diagnosed, high-definition surveillance colonoscopy with biopsies should start at age 15 years and be repeated at 1- to 2-year intervals to evaluate for colonic dysplasia. Patients with PSC, including children, who do not have known IBD should undergo ileocolonoscopy with biopsies at the time of PSC diagnosis to screen for asymptomatic colitis.
For Those Interested in Getting Involved in Finding Treatments and a Cure

We encourage all to consider participating in clinical trials. Even if you are currently taking Urso, the AASLD guidance states: All patients with PSC should be considered for participation in clinical trials.

Importantly, two future directions proposed in the guidance align with PSC Partners efforts through the Worldwide Integration of Natural History Databases (WIND) Initiative and Patient Reported Outcome Measure (PROM) project, which are both part of the ICRNetwork. These major research initiatives were launched with support from the PSC community, including feedback from patients, caregivers, and some of the authors of this guidance.

Thank you to AASLD and the authors of this importance guidance, who spent much of 2021 and 2022 working on this important document. 
15 Days Left In This Fun Fundraiser!
NOW IS THE TIME TO DONATE TO PSC RESEARCH
Last week, we surpassed the amount needed to trigger a dollar-for-dollar $13,120 contribution match from the PSC Partners Board of Directors for WALK83.01 for PSC. Thank you to everyone who has donated, so far.

We are about $20,000 from our $120,000 goal, which will support two PSC research projects for two years. With 100% of all donations to this fundraiser supporting research, your donation in any amount will directly aid the search for treatments and a cure.

Scan the QR code above or VISIT THIS LINK to donate anytime through September 30th. Thank you!
PSC Symptoms, Living Donor Transplant, and More:
A Discussion with Nicola Tessier
In episode 34 of the Living with PSC Podcast, Host Niall McKay talks with Nicola Tessier, a post-transplant PSC patient, about her PSC diagnosis, dealing with symptoms, MELD score issues for PSC patients, receiving a living donor liver transplant from her brother, having children post-transplant, and much more.

"The need for a liver transplant was heavily driven by my (increased) risk for cholangiocarcinoma," says Tessier. "On paper, I looked less sick than I really was. So, the option of a living donor was a better fit for me."

She received 56% of her younger brother's liver. "It was a very special day," she says.
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.
CHAN ZUCKERBERG INITIATIVE RARE AS ONE GRANT INCREASES CAPACITY AND BUILDS
RESEARCH NETWORK FOR PSC PARTNERS
The Chan Zuckerberg Rare As One project unites rare disease communities in their quest for cures.

PSC Partners is proud and honored to have been part of the first cohort of recipients of the Chan Zuckerberg Initiative (CZI) Rare As One grant with a goal of building capacity, creating a research network for PSC by working with the patient community, researchers, and clinicians, and hosting an international scientific meeting to convene the research network.

We're happy to say we were able to accomplish those goals and more.

Here are some highlights:

  • Created a research network for PSC by working with the patient community, international researchers, and international clinicians

  • Hosted an international scientific meeting to convene the research network


  • Built capacity for PSC Partners and the research network by hiring key scientific and development staff, implementing new digital tools, and participating in Rare As One trainings and convenings

  • Actively engaged with the Rare As One network by working with the network and sharing knowledge, resources, and learnings with other grantees

"Luck is not a national strategy. We need to build strategies that take
luck out of the equation for every person."
Dr. Pricilla Chan
Co-Founder and Co-CEO, Chan Zuckerberg Initiative
19th ANNUAL PSC PARTNERS CONFERENCE
What we know, so far, about this important event.
We have been receiving lots of inquiries about the 19th Annual PSC Partners Conference, which will take place in 2023. We are in the early stages of planning, and there are many things in flux, but we thought we'd fill you in on what we know, so far.

  • We will definitely host a conference in 2023, either in April or June.
  • We hope to offer an in-person event with an option to attend some portions virtually.
  • We are determined to ensure the event is COVID-friendly. If we are in person, meals will be held outdoors.
  • Whether we are in person, virtual, or hybrid, we are gathering an impressive lineup of presenters poised to speak about the most up-to-date PSC and PSC-related research and information.
  • As usual, numerous social opportunities will be available, as well, to ensure a beneficial and enjoyable time for all.
  • While travel costs have increased since our last gathering, including hotel prices, we are working hard to get the best deal for attendees.

We know people are anxious to learn more, so you can plan accordingly. We will share information quickly as plans are finalized.

WE TRULY HOPE TO SEE YOU SOON.
DON'T MISS OUR UPCOMING WEBINAR, SEPT. 21, 2022
For this webinar, we have assembled an amazing group of speakers to talk about current clinical trials designed to find treatments and a cure for PSC. Attendees will have the unique opportunity to visit multiple breakout rooms to find out how PSC patients can get involved.

We've never held a webinar quite like this. Don't miss it.
REGISTER FOR AN UPCOMING
PEER-TO-PEER SUPPORT ZOOMROOM
PSC Partners ZoomRooms provide peer-to-peer support for our community. People who have attended in the past keep coming back, because they know these virtual gatherings are a great place to chat with others who truly understand.

ZoomRooms take place at 6 p.m. MT (5 p.m., PT, 7 p.m. CT, 8 p.m. ET.)
"I was so happy to be part of the group on Zoom. This was the first time I had interactions with people with PSC. It was nice, because it was a small, relaxing meeting."
-- PSC Patient and ZoomRoom Attendee
WELCOME THE NEWEST MEMBER OF OUR STAFF
Research Program Manager Sarah Curup Callif
Sarah Curup Callif (she/her/hers) joins PSC Partners with a personal connection to hepatic disease and a professional commitment to finding PSC treatments and a cure. As the Research Program Manager, she will be organizing and executing new and existing PSC Partners research programs, including the ICRNetwork and the WIND Initiative.

With a background in nonprofit program management and experience coordinating clinical trials that center the patient voice and highlight quality of life for people with rare diseases, Sarah comes equipped to connect efforts between staff, volunteers, research partners, and the broader PSC Partners team. She holds a Master’s degree in public administration, a Bachelor of Science in community engagement and education, and, under the direction of the Director of Research Strategy Dr. Ruth-Anne Pai and the Research Committee, will be heavily involved in the research grant program, the Patient Reported Outcome Measure (PROM) project, and more. Please feel free to reach out to meet our new Research Program Manager and learn more about getting involved, staying informed, and finding treatments and a cure for PSC. Email her at sarah@pscpartners.org.
Meet Our Board of Directors
The entire PSC Partners Board of Directors consists of volunteers who are all either patients with PSC or caregivers/family members, all volunteering their time to advance our mission to drive research to identify treatments and a cure for PSC while providing education and support for those impacted by this rare disease. Click the graphic below to meet our board members and learn where they live. Click here to learn more about this inspiring, hard-working group.


Welcome to Sandi's
Circle

The Origin of the PSC Facebook Support Groups

According to a chapter in the book Sandi's Journey, Sandi Pearlman and another PSCer started the PSC Partners Facebook Patient Group in 2008. As described in the 2008 fall issue of The Duct, "Get in touch with other PSCers your age to share concerns, ask questions, and discuss what life is like when you're young and diagnosed with PSC. If you've ever needed a place to complain about the fact that you need a nap when all your friends want to do is go out and party, share how you deal with drinking, ask others about issues dealing with starting a family, etc., here's a place for you!" Later, she added that the group also provides a place for caregivers, family members, friends, and PSCers of all ages.

Over the years, the PSC Partners Facebook Support Group has grown, having over 2,000 members at the time of Sandi's passing in 2013 to over 2.9k in the Closed Group and 5.1k in the Open Group today. That's a big change, but what hasn't changed is the commitment started by Sandi within those groups for honesty, integrity, inclusion, and a dedication to the dissemination information and support in a helpful way.

If you haven't visited these groups, we encourage you to check them out. Search PSC Partners on Facebook, and visit the Open Group, the Closed Group, and PSC Partners headquarters page, which has 3.6k followers. (You can also find links to all of our social media pages at the end of this newsletter.)
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.
YOUR OLD JALOPY CAN FUEL THE SEARCH FOR FOR A CURE FOR PSC
Support the mission of PSC Partners by donating your old or new vehicle. Unwanted vehicles including cars, trucks, motorcycles, RVs, boats, airplanes, heavy equipment, farm machinery, (running or not) are all eligible for donation.

Some restrictions apply. Click here for more information.
Our Mission: PSC Partners Seeking a Cure is to drives 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