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THE DUCT
A Monthly Newsletter for the PSC Community
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The new grants cycle has begun for
PSC Partners Seeking a Cure and PSC Partners Canada.
Prospective applicants should complete the
Interest and Eligibility Form linked in the button below.
You must complete this step to be considered.
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Soon after you’ve completed the form, a member of the PSC Partners staff will be in touch with next steps and detailed application instructions.
If you have a research proposal idea, we hope to hear from you soon. Even if you're not applying this year, please help spread the word by forwarding this email to a researcher or colleague who may be interested.
Click links below for more information about our Research Grants Program:
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Join PSC Partners Canada for a weekend of peer support, learning about PSC, and about the patient-partnered collaborative research project in Toronto that is exploring PSC on a cellular level. There will be speakers from the Ajmera Transplant Centre, Toronto Centre for Liver Disease, SickKids, and the University of Toronto.
Don't miss this unique chance to ask questions and meet others with PSC! Open to anybody affected by PSC, in Canada or elsewhere! PSC has no borders!
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Going Through a Liver Transplant:
A Conversation Between a Husband & Wife
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In episode 40 of the Living with PSC Podcast, Host Niall McKay and his wife Marissa Aroy give us a rare peek behind the microphone as they discuss Niall's recent liver transplant.
"We're doing a very unusual podcast today, because we're talking about myself," says Niall. "We don't really like to be on camera or in front of the microphone anymore, but we will make a special occasion of this for you to tell you what it was like for me to go and have a transplant."
Niall, who is just a couple of months into his recovery, started as an alternate for an available liver, and, after hours of testing, prep, and waiting, went home. Both he and Marissa fell into a deep sleep.
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"Both of us sleep through our phones ringing like nine times, until the police bang on the door," says Niall, adding that it felt like it was happening in a dream. "So I get up. There's a cop at the door. He's like, 'Are you Niall McKay?' I was like, 'Yeah,' and he said, 'Will you answer your phone? (The hospital is) trying to get ahold of you!"
"It was a very abrupt and very startling thing to say and happen in the middle of the night," adds Marissa.
"My first thought was that I hope I hadn't missed it," states Niall.
Thankfully, he hadn't missed it, and Marissa and Niall share their feelings, memories, and more during this unique, special Living with PSC episode.
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Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
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Thank You For Attending and Supporting the
2023 PSC Partners Annual Conference!
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The recent PSC Partners Conference in Henderson, Nevada, was a tremendous success.
We are grateful to all the presenters who shared their time and expertise with attendees. We loved seeing all the patients, caregivers, family members, and friends offering support and smiles to one another throughout the weekend. We appreciate the sponsors who helped make it happen, and we are so grateful for the volunteers who lent a hand to make sure everything ran smoothly. If you could not make it this year, you were missed and not forgotten. You are all an important part of the PSC Partners community, and we appreciate and love each and every one of you!
We are processing the presentations and photos, which we will share with you soon on our website and YouTube Channel. In the meantime, here are a few photos sent to us by our amazing Conference photographer Kelly Shepherd. |
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We Were Thrilled to Host the First-Ever
PSC Partners Scientific Working Group Gathering at
2023 PSC Partners Annual Conference
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PSC Partners, in collaboration with the Resnek Family Foundation, hosted key stakeholders from the U.S., Canada, and Europe prior to the PSC Partners Annual Conference. Attendees were able to collaborate, share information, and bring us closer to our goal of finding treatments and a cure for PSC.
Huge thank you to all the international PSC experts who came from across the globe to discuss four main topics:
1. Clinical Trials for PSC: What are the key biomarkers and endpoints?
2. Gut-Liver Axis: How do we make sense of the association with IBD?
3. Diagnosis/Prognostic Biomarkers: What are the next steps towards early diagnosis and improved understanding of prognosis?
4. Unraveling the Pathophysiology of PSC: What tools and strategies do we need?
PSC Partners Conference Co-Chairs Dr. Josh Korzenik, Harvard University, and Dr. Chris Bowlus, UC Davis, offered an overview of this important meeting. A recording of that presentation will be available soon on our website and YouTube Channel. |
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Register NOW for Upcoming
ZoomRoom Peer-to-Peer Gatherings
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Whether you've been before, or this will be your first time,
we hope you'll join your peers for these supportive, virtual discussions.
It's a great opportunity to speak with others who truly understand.
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Teens with PSC & Post-Transplant (13-20)
Tues., Sept. 26
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Adults with PSC & Post-Transplant
Tues., Oct. 10
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Caregivers, Spouses, and Parents
Thurs., Nov. 2
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Those Carrying on the Spirit
Tues., Dec. 5
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Send Us Your Global PSC Awareness Day Greetings! |
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Global PSC Awareness Day is October 29th. It's a day when we spread awareness about our rare disease, and we need your help. Please take a couple of minutes to record yourself and/or your friends and family saying, "Hi! Happy Global PSC Awareness Day from (State) (Country)." You can include your name or remain anonymous. The European Liver Patients Association will be compiling videos and releasing them on the big day. (See last year's compilation above.) Send your videos to contactus@pscpartners.org.
Other ways you can show your support on October 29th are:
- Wear your PSC Partners gear to increase awareness (Get gear at our online shop)
- Keep an eye on our social media pages, and share the facts and videos we post
- Create your own social media messages and post them on Oct. 29th
- Watch and share the PSC webinar roundtable discussion released that day
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Welcome to Sandi's
Circle
Sandi Pearlman Shares a Unique Suggestion for
Dealing with Fatigue
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"On days when fatigue won't let you get out of bed, give in. Make a day of it. Every once in a bit, let the fatigue monster win, but on your terms. Cuddle up under a generous comforter, and watch some bad TV or pop your favorite DVD into the laptop. Commit yourself to the plan. It's not fatigue's or your body's choice to lie in bed all day. It's yours. You're in control, and, if you want to sneak a bit of ice cream or popcorn in there with you, who's going to know? And, for those of you with kids or a (partner), make it an event. Bring them on in and introduce the kiddos to Mary Poppins, or The Wizard of Oz." |
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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. |
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Our Mission: PSC Partners Seeking a Cure 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.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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