This issue is JAM PACKED with time-sensitive action items! LAST CALL for discounted hotel rooms for the Oct 15 Toronto PSC patient event and LAST CALL for $$ to pay travel and hotel costs. Please act today and don't miss this opportunity for education and support! | | |
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► Oct 14-15: Canadian PSC Patient Event "What the Cell?!"
► Sept 16: Canadian Online Auction Launch Hope is in Our Hands
► Contest! Win 2 Tickets from Air Canada!
► Highlights from the 19th Annual Patient & Caregiver Conference
► Recap & Highlights from the ICRN Meetings
► First Time Attendee's Perspective on the Conference
► Canada WALK83.01
► Study Opportunities!
► Sept 10-16 is Living Organ Donation Week
► Upcoming peer support Zoom Rooms
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Register Today: PSC Patient Event in Toronto!
Please join us for a Canadian PSC Partners patient event!
LAST CALL for scholarships for travel support!
LAST CALL for discounted hotel rooms!
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If you've never met another person directly affected by PSC, here's your opportunity to meet 100, in Canada! There truly is nothing like it.
"I was blown away by the hopeful optimism and the genuine joy present from everyone throughout the weekend. If you’re able to, I can’t recommend attending a conference enough." Matt, 2023 US conference attendee
Join us 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. We will be joined by speakers from the Ajmera Transplant Centre, Toronto Centre for Liver Disease, SickKids, and the University of Toronto.
Don't miss this rare chance to ask questions and meet others with PSC! Open to anybody affected by PSC, in Canada or elsewhere! PSC has no borders!
In partnership with:
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Made possible in part by grants from the Chan Zuckerberg Initiative DAF, an advised fund of Silicon Valley Community Foundation and the CIHR, Canadian Institutes of Health Research.
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Ticket fee: $40 Due to a generous grant from the Chan Zuckerberg Initiative, for patients and caregivers, cost for this event is limited to a small fee to cover lunch and dinner.
Hotel: Holiday Inn Toronto Downtown Centre
Address: 30 Carlton Street, Toronto, ON, M5B 2E9 (located 10 minutes walking distance of main event)
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The Agenda is Under Development
Topics Include
- Peer Support
- Basics of PSC
- Patient-Partnered Single-Cell PSC Studies - Uncovering the Cellular Ecosystem of PSC
- Mental Health
- Transplant
- Clinical Trials and Research
Conference Schedule
Saturday October 14
- 9am - 4pm: Educational PSC event
- 4pm - 6pm: Break
- 6pm - 9pm: Dinner and social event
Sunday October 15
- 10am - 1pm: PSC Community Peer Support and Closing Remarks
In order to make this event as accessible as possible:
- We are thrilled to be able to offer childcare in an adjacent room on-site during the educational event and peer support meetings. Childcare spaces will need to be confirmed in advance.
- French and ASL translation will be available. Please request for other languages and we will do our best to arrange.
If you have questions or ideas for us, and/or would like to volunteer, we'd love to hear from you. Please reach out via email to Jessica Travis at office@pscpartners.ca.
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Canadian Online Auction
September
16 - 24th, 2023
The Hope is in Our Hands Canadian Online auction is fast approaching! Be sure to check out the amazing items available for this years auction.
Beginning the 16th, please VISIT THIS LINK to view and bid on items.
To whet your appetite, below is a small snapshot of the many generously donated items in this year's auction!
Once the auction opens, we'll be sending an email with just the auction information that we hope you will share broadly with you friends and family. The more eyes on these great items, the more $ for PSC research! Thank you for helping! Thank you so much to the volunteer auction team led by board member Sandy VanOstrand!
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Win 2 round trip tickets to anywhere in North America that Air Canada flies! | |
The auction also includes a special contest for Ontario residents. You, your friends, and family can buy $10 tickets for a chance to win 2 round trip tickets to anywhere in North America that Air Canada flies!
Please help spread the word among all those you know who are Ontario residents to help fund PSC research! We will have links on our pscpartners.ca website, starting September 16th.
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Presenters came from near and far, from various specialities, and included staff and patient advocates. | |
The 19th Annual PSC Partners Patient and Caregiver Conference just wrapped up this past weekend in Henderson, Nevada. PSC patients, caregivers, and loved ones gathered with PSC experts from around the world to share a weekend of learning, collaboration, and support. A huge shout out of appreciation to the PSC Partners staff and the many volunteers who made this spectacular event a success. Some highlights...
- Nothing can compare with the tangible feeling of comfort that comes with being in the same space as a group of people who are walking a similar path or who understand PSC.
- Hundreds of individuals attended. Funding from the Ken Hollander Foundation provided travel scholarships to support access.
- 21 attendees from Canada were present!
- 7 PSC Partners Canada past research grant recipients participated in the ICRNetwork.
- Two days full of learning about PSC and ongoing research and clinical trials.
- Attendees were reminded of the importance of joining the Patient Registry with an analogy to the BELIEVE meme from Ted Lasso.
- The group gathered outside under the warm Nevada night for dinners and shared a beautiful and moving candle ceremony, led by Joanne Hatchett of PSC Partners to recognize the community we share and to hold space to remember those no longer with us.
- Saturday night fun was had with a western theme, line dancing, and trivia games.
- Peer group sessions and the following Sunday AM peer group summaries built priceless bonds of support and understanding.
- Recordings of all general sessions will be available as soon as humanly possible on the PSC Partners youtube channel. Slides of break-out presentations will be made available on the PSC Partners website. Photos will be shared!
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PSC Partners (US) CEO Ricky Safer and Don Safer welcoming all | |
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Saturday under the stars, photo credit Kelly J. Shepherd | |
Canadian Board members Sandy VanOstrand, Mary Vyas, Rachel Gomel | |
Canadians enjoying the western theme | |
Ricky Safer with Canada 2022 grant recipient Dr. Heather Francis and Canada Board member Rachel Gomel | |
International Collaborative Research Network
First in-person meeting of the PSC Partners ICRNetwork!
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With support from the Resnek Family Center for PSC Research, the first in-person meeting of the PSC Partners ICRNetwork was held in the days before the Annual Patient and Caregiver conference. | |
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51 PSC clinician scientists and researchers gathered in working groups with the mandate to propose collaborative projects to address gaps in our understanding of PSC in the following four areas: (1) clinical trials (2) diagnosis and prognosis (3) gut-liver axis and (4) pathophysiology.
Importantly, each of the working groups included patient advocate representatives from the PSC Partners staff or Board of Directors.
To learn more about the ICRNetwork, please visit this link at the PSC Partners website and learn about the two ongoing ICRNetwork projects, WIND-PSC and the PSC Symptom Assessment Project.
Stay tuned for updates as the project proposals generated at this important inaugural meeting of the ICRNetwork are refined and shared out. A recording of the report to the patient community gathered at the Annual Conference will be part of the general session recordings to be released as soon as possible. Watch for announcements!
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Conference from a First-Time Attendee's Perspective | |
Canadian attendees (and research grantee) at the 2023 PSC Partners Annual Conference. Photo Credit: Kelly Shepherd | |
Hello fellow Canadian PSCers! It’s Loon Duct contributor Matt here (I'm the tall one in the back row of the picture above) and I had the pleasure of attending my first in-person PSC Partners Annual Conference this past weekend. Despite attending the virtual conference last year, nothing compares to face-to-face interactions and building immediate connections with so many people in our patient and researcher community!
I’ll admit I was nervous walking into the conference centre, but the nerves quickly disappeared as I sat down at the Newcomer Orientation session and met 2 fellow first-time Canadian attendees. Through the beginning of the session, Ricky Safer and the whole PSC Partners staff and conference volunteers set the tone for the weekend with warm and genuine opening remarks. You could hear the excitement in their voices and the see the community spirit in their actions.
If you took part in the virtual conference last year or tuned into the many informative webinars, each room was surrounded by familiar faces. The conference co-chairs, Dr. Joshua Korzenik and Dr. Chris Bowlus, provided opening presentations, followed by “The State of PSC Research in 2023” by Dr. Gideon Hirschfield. The rest of the afternoon was filled with breakout sessions, tailored to different tracks such as the basics of PSC, transplant or sessions specific for caregivers. Each session had ample time for Q&A, so everyone had the opportunity to ask any burning questions on their mind.
One of the most hopeful and optimistic general sessions was “The Clinical Trial Landscape in PSC – Updates and Opportunities” where representatives from five pharmaceutical companies with PSC treatments in their pipeline (Chemomab, Escient, Ipsen, Mirum and Pliant) presented the latest information and opportunities for participation in clinical trials. The consensus throughout the entire conference was there has never been a more promising time for PSC research and potential treatments.
The social activities, such as the dinner on first evening where everyone was grouped by region, helped build more connections with others in the community. By day 2, I recognized and had met dozens and dozens of other patients, caregivers and researchers. The general sessions on day 2 continued to present the latest and greatest findings and areas of focus from researchers. I appreciated the conversational, and at times very funny, interactions between the researchers and those in the PSC community. I highly encourage everyone to make time to watch these general sessions once they become available on the PSC Partners website (stay tuned)!
One of my personal highlights was having lunch with my peer group and meeting others in a nearly identical stage of PSC and stage of life. Bonds were formed and we continued to hang out and get to know each other through the dinner celebration on Saturday evening and then into the formal peer sessions on Sunday morning. I’m grateful for the opportunity to meet these folks and I’m excited to keep in touch with them as I continue on my PSC journey.
Like many folks reading this newsletter, I had never met another PSCer in person until last Friday. I felt such a strong mix of emotions throughout the entire weekend, driven by the kindness and generosity of the PSC community. I was blown away by the hopeful optimism and the genuine joy present from everyone throughout the weekend. If you’re able to, I can’t recommend attending a conference enough. I can’t wait for the next one!
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Anytime is a good time to gather, and WALK83.01 gave this group of BC-based community members an opportunity to have an August PSC meetup! | |
In addition to the auction, there is still time to donate to PSC Partners Canada through the WALK83.01 initiative!
Why did we choose 83.01 as a goal? Because the unique disease code for primary sclerosing cholangitis (PSC) is K83.01.
Our goal: This year’s Canada goal is $40,000, which will support one year research grants. There's still time to support the teams participating across Canada! Please CLICK HERE to find a team to support with a donation. Any amount contributed helps make a huge difference!
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Quality of Life Study Opportunities
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There are two studies related to Quality of Life that are currently underway that are open to members of the Canadian PSC community.
1) International Quality of Life Study QRareLi
Improving the quality of life in patients with autoimmune liver diseases by structured peer-delivered support research study. Recruiting individuals living in Ontario.
If you are interested in enrolling or have questions to the Canadian study centre, please contact the study coordinator at q.rare@uhn.ca or at 1-416-340-3131 extn 6914.
Research coordinators from this study will be present at the October PSC patient event "What the Cell?!"
2) EMPOWER Mind-Body Wellness Study
In this program, participants get access to expert led physical movement, breathwork and meditation programming, plus weekly tips from doctors and other health care professionals about living with a chronic condition, and a psychology program about topics that help you to identify your values, learn about pacing and improve your sleep.
Those in the Canadian PSC community may be able to participate as part of the current batch of programming as it includes chronic conditions such as IBD, liver cirrhosis and those living post-transplant. You can learn more about the program and reach out to the research team by visiting https://empower-program.com/ or reaching out by email to empower@ualberta.ca.
In addition, there are at least four clinical trials currently active in Canada that are studying an investigational drug for PSC or symptoms of PSC. Be sure to check out the Clinical Trials page on PSC Partners website for the latest information about clinical trials relating to PSC. | | |
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#LDW2023 Living Donation Week is a public awareness event launched by the Centre for Living Organ Donation in 2020 with support from the transplant community across Canada and beyond. It is held annually, starting the Sunday after Labour Day. Learn More Here
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Upcoming PSC Peer Group Zoom Rooms!
These meetings are a great way for
Peer-to-Peer Connections!
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Join others folks from the PSC community for these supportive, helpful, fun virtual events. Space is limited. Registration required. Link to register below. The sessions are not recorded, and are intended as safe open forums.
All at 6:00pm-7:00pm MT (8pm EST)
Unless otherwise indicated, events are listed in Mountain Time
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Tuesday, September 26, 2023
Are you a teenager with PSC or post transplant? Want to meet others your age with PSC? This virtual support group is just for you!
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Tuesday, October 10, 2023
Adults with PSC & Post Transplant
Looking to connect with other PSCers? Join this virtual peer-to-peer support group to chat with others who truly understand the PSC journey.
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Thursday, November 2, 2023
Parents, Caregivers & Spouses
Join this virtual peer-to-peer support group to chat with other parents, caregivers and spouses of those effected by PSC.
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Tuesday, December 5, 2023
Living with Loss and Carrying on the Spirit
Join this virtual peer-to-peer support group to chat with others who truly understand.
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Watch the PSC Partners website, newsletter, and social media for updates.
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FOLLOW PSC PARTNERS CANADA ONLINE!
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PSC Partners Canada uses Facebook regularly to share news of interest to the Canadian PSC community. If you are not a Facebook user, the feed of postings is shared to a page on our website at pscpartners.ca. The Loon Duct is sent quarterly, so if you are wishing for more frequent contact, remember to follow us on Facebook, or check in periodically on the website.
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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.
PSC Partners Seeking a Cure Canada
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure
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