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► Canadian Paediatric PSC Day Highlights
► Attend the 2024 Annual PSC Partners Conference
► CASL PSC Partners Seeking a Cure Canada Award
► Summer Fundraising Initiatives: WALK83.01 Canada Returns!
► First Patient Enrolled Into the WIND-PSC Study
► PSC Partners at European Association for the Study of the Liver
► French version of What The Cell?! sessions
► Upcoming Zoom Rooms & Events
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Highlights from the Canadian Paediatric PSC Day! | |
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The first ever Canadian Paediatric PSC Day was held in Toronto, ON on June 1st, 2024. Attendees came from British Columbia, Alberta, Ontario, Nova Scotia, Illinois and California. For many, this was their first PSC in-person event; some returned after attending last year's What the Cell?! Toronto event.
The day consisted of making in-person connections and of presentations on topics such as the Basics of PSC, Mental Health, Paediatric PSC Studies, the Paeds Cellular Map of PSC, and a demonstration of a virtual reality experience of the human liver.
We were lucky to have experts sharing their expertise with us as well their Saturday!
- Dr. Gideon Hirschfield (hepatologist) from Toronto Centre for Liver Disease at UHN
- Dr. Amanda Ricciuto (GI) Children and Dr. Sara Ahola Kohut (psychologist) both from SickKids
- Single-cell research team members Sonya MacParland and Gary Bader from Ajmera Transpant and University of Toronto,
- Albert Fung from the Toronto Video Atlas of Surgery
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Attendees were able to try the VR headset and interact with a simulated abstraction of the liver and GI tract a see what the human liver looks like in 3 dimensions, visualize the liver's vascular and biliary systems, and follow what happens during an ERCP. | |
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Lunch and a smoothie bar were enjoyed by all and there was time to socialize once the presentations were over. Attendees rated meeting other parents and having peer and social time with others as one their highlights of the event. | Thank you so much to those who attended the event and made wonderful peer-to-peer connections. We look forward to seeing some familiar faces and meeting more PSCers and their families at the 20th Anniversary PSC Partners Annual Conference in October in Phoenix, AZ, USA. | Thank you our partners, our funders, and our corporate sponsors. Thank you to the many community volunteers who pitched in to help. Together in the fight, whatever it takes! | Photo credits Norman Huang | |
Attend the 2024 Annual PSC Partners Conference! | |
The Date and Location for Our 20th Anniversary
2024 PSC Partners Conference Is Set!
October 18-20, 2024
Phoenix, Arizona, USA
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Conference Co-Hosted by Dr. Tom Karlsen
The co-host of the 20th Anniversary Conference is Tom Hemming Karlsen, MD, PhD. Dr. Karlsen is a clinical specialist in internal medicine and gastroenterology working in Oslo, Norway. He is a professor of internal medicine at the University of Oslo and Research Head of the Clinic of surgery and specialized medicine at Oslo University Hospital.
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Tom Hemming Karlsen, MD, PhD | |
Conference Registration, Agenda & Hotel Registration | |
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The Canadian Association for the Study of the Liver
PSC Partners Seeking a Cure Canada 2024 Award
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PSC Partners Canada is happy to have awarded Audrey-Anne Laovoi, a student at the University of Laval, QC, the CASL PSC Partners Canada award for the best research abstract on PSC at the 2024 Canadian Liver Meeting held in Toronto in March.
The study investigated whether an omega-3 fatty acid derivative with liver anti-inflammatory properties can improve the response to low dose Ocaliva in terms of bile acid reduction. This research may help determine a safer pharmacological option to help treat PSC.
Entitled “Protectin DX improves the response to obeticholic acid in liver cells" with authors A.A. Lavoie, M. Verreault, J. Trottier, R. Maltais, J.Y. Sancéau, D. Poirier, A. Marette, and O. Barbier, the abstract can be found here.
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Photo Credit: The Canadian Association for the Study of the Liver | | |
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CASL President, Dr. Mark Swain, Audrey-Anne Lavoi, and Mary Vyas, PSC Partners Canada at the Canadian Liver Meeting in March 2024 | | |
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Do You Care about
Someone with PSC?
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Join us for a fun opportunity to do something concrete that will move us towards a cure.
No matter where you live in Canada or how fit you are, you can join the Canada Walk 83.01 for PSC Research.
We call it a WALK, but you can walk 83 blocks or jog 83 km or bike 83 miles...YOU set the goal and ask your friends to support you.
We have letters on our website to give you ideas about what to send or post to your friends and family. You can explain that since it is a rare disease we have to work extra hard for our research dollars and ALL THE MONEY RAISED GOES DIRECTLY TO PSC RESEARCH!
Why did we choose 83.01 as a goal? Because the unique disease code for primary sclerosing cholangitis (PSC) is K83.01.
Click on the link below to register your team or make a donation. The WALK83.01 Canada runs now through August 31!
Together we are creating a world where a PSC diagnosis comes with a cure!
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Will you be in the Metro Vancouver Area or the Greater Toronto Area area this summer?
Please join us for a walk and picnic.
11:00 am August 17th meeting at Garry Point in Richmond, BC
August date for Toronto TBD - stay tuned.
Please contact Sandy at sandra@pscpartners.ca for more information and to let her know if you are interested in coming. Feel free to bring a friend or family member with you.
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PSC Partners Announces the First Patient Enrolled Into the WIND-PSC Study | |
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In case you missed it, earlier this month PSC Partners and PSC Partners Canada publicly announced the first patients are enrolled in the WIND-PSC study, a global prospective cohort to support the development of new treatments for primary sclerosing cholangitis.
Currently, there are no regulatory-approved therapies for PSC and the development of vital PSC treatments remains challenging due to the rare nature of the disease. WIND-PSC has been developed to generate key data to remove barriers to drug development barriers and accelerate the development of effective therapies. The collected data will provide a rich and novel source of information to be shared widely with the PSC research community.
- WIND-PSC will enroll up to 2000 patients with PSC across North America and Europe
- Study designed in collaboration with top global PSC experts and aligned with regulatory guidance for using real-world data to develop new treatments in rare diseases
- First patient-led clinical research project of its kind in liver diseases and launched solely with patient community funds
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PSC Partners at the EASL ILC in Italy
In June, three representative from PSC Partners visited Milan, Italy to attend the International Liver Congress hosted by the European Association for the Study of the Liver.
Ricky Safer, CEO and Founder
Stephen Rossi, CSO
PSC Partners Seeking a Cure
Mary Vyas, President
PSC Partners Canada
A few highlights from the meeting:
- June 4, at the PSC Forum 7, convened by the Forum for Collaborative Research, a public/private partnership addressing cutting edge science and policy issues through a process of stakeholder engagement and deliberation: Stephen Rossi and Martine Walmsley of PSC Support UK presented work on a collaborative patient survey of acute cholantitis. Mary Vyas shared a patient story of living donor liver donation.
- PSC patient group representatives from around the world met at the ELPA booth.
- Ricky Safer presented the PSC Partners EASL award for best abstract on PSC to a packed room. The abstract reported on a European study of the prognostic value of fibroscan in PSC
- Recipient of a PSC Partners seed research grant presented an award winning oral abstract on single cell studies of bile duct biopsies
- WIND-PSC discussions were held with potential European study site investigators.
- Meetings were held with pharmaceutical and biotech representatives for updates on drug development
- International PSC Study Group (IPSCSG) updates included the launch of a recurrent PSC international registry that was initiated with funding from a PSC Partners Canada young investigator grant
- The gelato!
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Quelle cellule?! 2ème groupe de presentations - unicellulaire
The French video from the second set of group presentations from last fall's What the Cell?! event is up on YouTube! Click the link here or watch the video below.
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Upcoming
PSC Peer Group Zoom Rooms & Events!
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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, July 9, 2024
ZoomRoom: Teens living with PSC & Post-Transplant (ages 13-18)
Join this virtual peer-to-peer support group to chat with others who truly understand the PSC journey.
► Register Here
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Wednesday, July 10, 2024
ZoomRoom: Adults living with PSC &/or Post-Transplant
Meet fellow PSCers who are going through or have experienced the PSC journey.
► Register Here
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Tuesday, July 23, 2024
ZoomRoom: Caregivers in the PSC Community including parents and spouses
Join this virtual peer-to-peer support group to chat with others who truly understand the PSC journey.
► Register Here
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Monday, August 12, 2024
ZoomRoom: Living with Loss and Carrying on the Spirit
Join this virtual peer-to-peer support group to chat to meet others who have lost a loved one to PSC.
► Register Here
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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. | |
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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