WE LOOK FORWARD TO THE NEW HEIGHTS WE WILL REACH TOGETHER IN 2023! Please consider supporting PSC Partners Seeking a Cure during our end-of-year Trek to Find a Cure fundraiser. Your contribution in any amount will go a long way as we scale the mountain together in search of treatments and a cure for PSC.

Your donation bolsters PSC Partners Patient Registry growth, maintenance, and enhancement! In 2022, the number of patients in the PSC Partners Patient Registry increased by 15%. Expanded patient participation boosts data accuracy and improves clinical trial recruitment, accelerating PSC research.

Your contribution helps us amplify our messages, increase understanding of our rare disease, and champion the community! PSC Partners is dedicated to ensuring our community is informed and supported. This year’s highlights include: webinars viewed by 2,500+ people; our annual conference garnering a record number of 550 registrants - a 58% increase; and numerous virtual support groups attended by many, including many newcomers. 

Your support aids in the international pursuit of treatments and a cure by empowering PSC Partners to search out and fund the most promising PSC-related studies! To date, PSC Partners has dedicated over $6 million to research funding, including a wide range of new PSC research projects in 2022. WATCH YOUR EMAIL NEXT WEEK FOR AN EXCITING ANNOUNCEMENT ABOUT THE GRANTS WE ARE FUNDING THIS YEAR!

PSC Partners, along with members of our community, generous partners, supportive medical professionals, and more reached great heights this year. Take a look at a few of the highlights:

VIRTUAL PEER SUPPORT GROUPS: We hosted 15 peer-to-peer support group sessions in virtual ZoomRooms and provided a safe place for patients with PSC, those with transplants, caregivers, parents, spouses, and those living with loss to interact, garner knowledge, and feel supported by others who truly understand. These virtual support groups attracted new people who made up 35% of the support group participants.  

WALK83.01 FOR PSC: The second year of our WALK83.01 for PSC fundraiser was extremely successful. Together, we surpassed our goal of $120,000 by more than $15,500, for a total of $135,565.18. These funds will support two PSC research projects for two years plus more. Additionally, participation increased over last year, with each walker/runner/swimmer, etc. not only raising funds, but also increasing awareness for our rare disease, all while having fun.

EDUCATIONAL WEBINARS: Over the past 12 months, we conducted nine educational webinars that, thus far, have had an audience of 2,500. Among them, the most frequently viewed webinar in 2022 was PSC and IBD: What Everyone Wants to Know About Diet and Nutrition. View that recording and the other webinars focusing on various aspects of PSC here.

INTERNATIONAL COLLABORATIVE RESEARCH NETWORK: Inspired by the “Collaborative Network Model” defined by the Castleman Disease Collaborative Network (CDCN) in 2016, PSC Partners kicked off our own ICRNetwork at this year’s annual conference. Under the leadership of our Director of Research Strategy Dr. Ruth-Anne Pai, through the ICRNetwork, we will champion the patient voice as we work with our partners around the world to:

PATIENT-REPORTED OUTCOME MEASURE (PROM): Regulators and researchers have emphasized the absence of an effective PSC-specific PROM that scientifically captures how a person with PSC feels and functions. Collaborating with experts from North Carolina and Duke, the PROM project was launched this year to ensure that the PSC patient voice and symptom experience are heard loud and clear during clinical trials, as well as to satisfy regulatory requirements. As the first effort in this initiative, PSC Partners hosted two patient focus groups to discuss tools to best capture information about PSC symptoms.

EXPANDED DIVERSITY, EQUITY AND INCLUSION EFFORTS: Over the past year, we initiated our Embracing Diversity in PSC initiative by developing our PSC Partners Statement on Diversity, Equity, and Inclusion, and launching a DEI Working Group. So far, we have conducted a DEI webinar, the first in a series, Embracing Diversity in PSC, which gathered 11 panelists and numerous attendees from throughout the PSC community to explore ways to identify and mitigate health inequalities in PSC. Additionally, we have added a new category to our peer-to-peer ZoomRoom support groups, Celebrating Diversity in PSC. This initiative provides us with a powerful tool for expanding our reach to include those we couldn't reach before. The first virtual gathering of this group is January 11, 2023, and everyone in the PSC community who has felt underrepresented based on race, ethnicity, gender, or other factors is welcome and encouraged to attend.

Supported by the Chan Zuckerberg Initiative (CZI), the multi-year primary sclerosing cholangitis (PSC) project will focus on clarifying the cellular mechanisms of pediatric PSC, a rare liver disease, and identifying potential cellular targets for effective therapies. A unique aspect of these projects is that patients will be centered in the work. Each team is co-led by a Coordinating Primary Investigator (PI) and a Patient Organization PI. For the PSC project, entitled Understanding the Cellular Ecosystem of Primary Sclerosing Cholangitis, the Patient Organization PI is Ruth-Anne Pai, PhD, Director of Research Strategy at PSC Partners. Dr. Pai joins a multi–disciplinary and cross-institutional team from Toronto, ON, Canada, made up of Coordinating PI Sonya MacParland, PhD, University Health Network, and PIs Gary Bader, PhD, University of Toronto, and Amanda Ricciuto, MD, PhD, The Hospital for Sick Children. 

“We are extremely grateful to see this important research supported, and we’re excited to work with this team,” says PSC Partners Canada’s President Mary Vyas. “We have been engaged with this research team as a patient partner since 2020. Having immunologist Dr. Ruth-Anne Pai on staff to serve as the patient-PI creates a rich opportunity. It is our hope that delving deeper into the cellular biology of pediatric primary sclerosing cholangitis will lead us closer to our goal of finding treatments and a cure for PSC.”

About this CZI Research RFA: The Chan Zuckerberg Initiative’s (CZI) Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Pediatric Disease RFA Grantees brings together patient-led rare disease organizations and research teams for four-year research projects. Get more information here.

Patient-Led Rare Disease Grantees: The other rare disease patient organizations selected as CZI grant recipients for this RFA are NEC Society, Children’s Interstitial and Diffuse Lung Disease (chILD) Foundation, RUNX1 Research Program, and Cure JM.

 CELEBRATING DIVERSITY IN PSC

Are you looking for a safe place to connect with others who truly understand? Are you a PSC patient, caregiver, or family member who feels underrepresented in the PSC community based on your race, ethnicity, gender, or other factors? Our upcoming virtual support group is just for you!

Nobody impacted by PSC should feel uncared for or underrepresented. With that in mind, PSC Partners created a safe, virtual space just for YOU! In this group, you will receive peer-to-peer support from others who may have similar lived experiences, because nobody with PSC should feel alone, unsupported, or left behind.

6 p.m. MT (5 p.m. PT, 7 p.m. CT, 8 p.m. ET)

Can you believe we have recorded 35 episodes of our Living with PSC podcast? From the first interview with PSC Partners Founder and CEO Ricky Safer talking about the patient perspective to our most recent interview with Dr. Kidist Yimam, Medical Director, Autoimmune Liver Disease Program, CA Pacific Medical Center, addressing health inequalities in PSC, we've covered lots of ground.

None of this would have been possible, or done so well, without podcast Host and Editor Niall McKay, an award winning independent media producer and patient with PSC. Each month, Niall 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.

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.)

Did you see our first four episodes of Community Connections, expertly put together by Producer, Director, and Filmmaker Rob Mottola, a PSC Partners volunteer and patient with PSC? According to Rob, "The goal of Community Connections is to bring our community just a little bit closer together." Sounds great to us! Please say hello to Yvette, Fred, Emmett, and Julianne.

Register for a ZoomRoom and/or join the

Sandi Pearlman strongly believed in mentorship. In fact, she was the first chair of the PSC Mentor Program, which launched in 2009, and, while PSC Partners ZoomRooms didn't exist until a couple of year's ago, we know Sandi would have loved them, too! She knew the power of peer-to-peer support, and saw firsthand the relief those in the PSC community feel when they are able to connect with and learn from others who truly understand.

"Diagnosis of a rare disease which most people have never heard of is downright terrifying," she says in her book Sandi's Circle. "Like Thoroughly Modern Millie's Mrs. Meer's is forever saying, 'Sad to be alone in the world.' And it is...only, we're not. Let me emphasize that. We are NOT all alone in the world!"

With Sandi's words in mind, why not start out 2023 by doing something good for yourself and others in the PSC community? Join the Mentor Program as a mentor or a mentee. Register for an upcoming ZoomRoom virtual support group. Pass along this information to others who will benefit from knowing they are not alone in the world!

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.

If your place of work matches charitable donations, don’t forget to tell them about your gift to PSC Partners. This is a terrific way to multiply the impact of your donation! Email us at contactus@pscpartners.org, or call 303-771-5227, with questions.

Shop • COVID-19 • Volunteer • Ways to Give