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THE DUCT
A Monthly Newsletter for the PSC Community
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Save the Date for
2022 PSC Partners Conference
June 2 - 5, 2022
This Conference Will Be Held Virtually.
Get more information below.
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Get more information about the 2022 PSC Partners Annual Conference
Join Our Virtual Gathering!
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"I know it must have been a difficult decision to switch from in-person to virtual for the conference this year, but it certainly is the most responsible decision for our own health."
--Attendee, Several Past PSC Partners Conferences
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The PSC Partners Annual Conference will meet virtually this year, June 2-5, 2022, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital. We are excited to see you in attendance as we bring our community together for important conversations, exciting research updates, and renewed connection via our interactive, virtual platform.
Why is the conference going virtual?
This was a painful decision for the PSC Partners Board of Directors and leadership. However, out of an abundance of caution and care for the health and safety of everyone in our PSC community, especially those who are immunocompromised, we have decided to transition the Annual Conference to a virtual gathering in an effort to keep everyone safe and healthy during this challenging time.
Why are we deciding this now?
We know the COVID-19 situation is in constant flux, but, in the wake of multiple COVID-19 variants, and due to contractual obligations with the hotel in Boston, it is necessary to make the decision at this time. A delay will result in substantial financial penalties for PSC Partners. As difficult as this decision is, we cannot, in good conscience, forfeit this community funding.
What can you expect from the virtual PSC Partners Conference?
Plans are in the works! You can expect:
- Selective and engaging presentations on PSC and current research presented by international experts on PSC and PSC-related diseases, co-hosted with Brigham and Women’s and Mass General Hospital (Harvard University)
- Opportunities to ask questions and have conversations with experts in small breakout sessions
- Numerous chances to reconnect virtually with friends from the PSC community during fun social events, engaging peer-to-peer sessions, small group chats, and more
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The Future of PSC Research and PSC Partners Research Priorities: An Interview with PSC Partners Director of Research Strategy Dr. Ruth-Anne Pai
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In episode 29, Host Niall McKay talks with Dr. Ruth-Anne Pai, PhD, PSC Partners Director of Research Strategy. They discuss the future of PSC research, the importance of patient voice and participation, PSC Partners research priorities, and more.
"We, as a community, with the patient voice, are prioritizing the most important questions," says Pai, adding that three primary areas of focus have been identified, so far. "Having a Patient-Reported Outcome Measure (PROM), surrogate endpoints, and an external control arm (will), we hope, accelerate and improve the rate of success for clinical trials."
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Click below for links to information, research, and websites mentioned in this interview:
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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.
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PSC Partners Seeking a Cure Statement on
Diversity, Equity, and Inclusion
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At PSC Partners Seeking a Cure, our mission 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. We recognize that under-represented and disadvantaged patients, families, and caregivers endure much greater challenges due to inequitable treatment and lack of support throughout the healthcare system. We cannot accomplish our mission without promoting equitable access to PSC treatments, education, and support for all living with and impacted by PSC.
We are grateful to community members who have brought attention to opportunities to take action toward ensuring diversity, equity, and inclusion (DEI) across our organization and community. We acknowledge that our prior DEI efforts have not been as robust as we intended, and we are committed to growing and improving as an organization while fostering a sense of belonging for everyone. We appreciate the continued dialogue that helps us to learn and evolve in our journey of meaningful change and growth.
Diversity enriches and strengthens us, and we aim to foster a sense of inclusivity and belonging.
PSC Partners is committed to:
- Pursuing diversity, equity, and inclusion within our staff, board of directors, and among our broader community.
- Championing diversity among our patient advocates, invited speakers, and research collaborators, and promoting diversity, equity, and inclusion across all of our educational and support programs.
- Striving to improve outcomes and quality of life for all living with PSC, acknowledging that systemic barriers contribute to health inequity and culminate in unacceptable, disparate outcomes for marginalized groups.
- Working to identify and eradicate health disparities within the PSC community, while honoring the fundamental value and dignity of all people living with PSC.
As we move forward, we will take action to enhance diversity, equity, and inclusion within our team and across the PSC community. We look forward to sharing and discussing our progress with you openly and with full transparency. Thank you for being a part of this important journey.
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Bringing Our PSC Community
Just a Little Bit Closer Together!
PSC Partners Community Connections
with Host Rob Mottola
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PSC Partners Community Connections is a video series filmed and hosted by Producer, Director, Filmmaker, and PSC Patient Rob Mottola.
"The goal of our show is to talk with people all throughout the landscape of PSC, and bring our community just a little bit closer together," says Mottola.
Check out the first two interviews in this series. New episodes will be uploaded monthly on our YouTube channel.
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JOIN US FOR THE NEXT WEBINAR IN OUR
ROADMAP INITIATIVE SERIES
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Natural History 101
Power of the Patient Experience:
The Basics of Natural History Registries
Thursday, February 24, 2022
6 p.m. MT
(5 p.m. PT, 7 p.m. CT, 8 p.m. ET)
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Goals for This Webinar:
- Learn more about how patient data, like lab work and medical records, drive future research and drug development for PSC
- Discover how researchers and clinicians collect data
- Learn what it means to study the natural history of PSC
- Discuss how quality of life and patient-reported data are a critical component of PSC Natural History Registries
- Learn why your patient voice and participation in Natural History Registries are so important
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SAVE THE DATE:
Natural History 201
Power of the Patient Experience:
Translating Natural History Data into Research Breakthroughs
March 23, 2022
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Watch the Recording of Our Last ROADMAP Webinar
Drug Development 201
Our Pursuit of a Cure for PSC:
Patient-Focused Drug Development
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PSC Partners Blog
A Teenage PSC Patient Contemplates College
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A teen with primary sclerosing cholangitis (PSC) and IBD contemplates her college choices, realizing that, with her underlying health conditions, this choice is trickier for her than it is for kids without health concerns.
"A big part of my decision is my PSC. I am worried about going far away from home because of it," says Lindsay. "(My doctor) said not to base my plans on my condition or imagining the worst - that I could and should go away to college based on all the other factors, and that we would deal with anything that happens health-wise as it comes up, if it even ever comes up."
Lindsay, 16, PSC and Ulcerative Colitis Patient
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Each month, we highlight a video we think will be of interest to our community. This month, we'd love for you to watch this short video from PSC Patient Nicole telling you why the PSC Partners Mentor Program is so important to her. Click arrow on graphic below. |
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REGISTER FOR AN UPCOMING ZOOMROOM
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ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
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ZoomRooms are not recorded, and are intended as safe, open forums.
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ZoomRoom for PSC
Caregivers/Spouses/Parents
February 2, 2022, 6 p.m. MT
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ZoomRoom for Those Coping with Loss & Carrying on the Spirit
February 8, 2022, 6 p.m. MT
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ZoomRoom for Adult
PSC Patients Aged 18+
March 8, 2022, 6 p.m. MT
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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.
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Welcome to Sandi's
Circle
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Sandi Uses Her "Glass is Half Full" Attitude to
Reflect Upon Living with PSC
"To look at me, I look like an average girl, perhaps a little too thin, maybe in need of a haircut, but rather unremarkable all the same. No one would ever look at me and think, well, that girl is fighting an incurable disease. And yet, that's exactly what I am doing, what we are really doing! We're fighters. We're given an impossible task: beat an incurable disease and live life without letting it destroy us, and, still, we march on.
PSC gives us an edge. We're not like the dude on the couch in the lounge somewhere thinking he has an unlimited lifetime to make choices and say sorry and make love and dream dreams. We know life is precious. It's ours for this day, and, hopefully, for the next and, damn, if we're going to waste it."
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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.
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Make a Recurring Gift to PSC Partners, and...
BECOME A SUPER LIVER GIVER!
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Start the new year off right by making a recurring gift to PSC Partners. Your monthly donation will be automatically deducted from your bank account or charged to your credit card on file, whichever is easier for you.
Except for our annual conference, all of our educational and support programs are offered free of charge to everyone. We’re driven to find effective treatments and a cure for PSC, and your gift will go a long way to bringing us closer to our goal.
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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.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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