DECEMBER CHALLENGE! Donations up to $15,000 made before 12/31/2021 will be matched!
Raising funds to research causes, treatments and potential cures for PSC, primary sclerosing cholangitis. Join us and show your love!
PSC Partners Seeking a Cure Canada is a registered Canadian charity, affiliated with US-based nonprofit, PSC Partners Seeking a Cure. Learn more about us at PSCPartners.ca. Gifts made to this campaign will be eligible for a receipt for Canadian tax purposes issued by the Charitable Impact Foundation.
If you prefer to make a donation with a receipt from a US 501(c)(3) nonprofit, please do so here. To learn more about the US organization, and for reliable and medically vetted source on information about PSC, please visit PSCPartners.org.
If you are making a memorial donation or a donation in someone's honour and would like us to notify family or honoured individual, after making your donation here, please complete this form.
Guided by our mission 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’ve been busy in 2021. Some of our activities are summarized below. If you’d like to hear more about our 2021 activities, we love to talk! Simply reach out by e-mailing [email protected]!
Highlights of 2021 Activities
Grants: Awarded two new promising research studies, complementing the 2021 research portfolio of seven new PSC Partners (US) research projects. Read more at Canadian funded projects.
Of particular interest to the Canadian PSC community is the grant to Mamatha Bhat at the Ajmera Transplant Centre at UHN in Toronto entitled Closing the Gap: Machine Learning Evaluation of Liver Transplant Wait-List Prioritisation for Patients with Primary Sclerosing Cholangitis. PSC patients are particularly disadvantaged by the current organ allocation system, as their degree of illness is not accurately reflected by the scoring system for priority on the waiting list. This study aims to both describe the current condition and challenges faced by individuals with PSC who are referred and listed for transplantation and to design a more effective prioritization system using artificial intelligence tools.
A Global Initiative: PSC Partners Canada and PSC Partners are launching a joint project to develop a PSC Partners-Driven Global Natural History Database. Together with global PSC researchers, we aim to prospectively collect data on a cohort of PSC patients globally to help rigorously document the natural disease course of PSC. This is a five-year project made possible by a consortium of funders, US and Canadian, who have committed significant 5-year funding plans to support this critically important project. Please join the ROADMAP webinars in February and March of 2022 to learn more about the importance of this natural history study.
Awarded the 2nd CASL PSC Partners Canada Award for the best abstract on PSC presented at the Canadian Liver Meeting 2021.
Serving as collaborator in an integrated knowledge translation role for a four-year CIHR-funded PSC research study on mapping the cells of the PSC liver.
Joined with PSC Partners in bringing the patient perspective to the pharmaceutical industry. We leveraged the learnings from the large 2020 PFDD (Patient Focused Drug Development Meeting on PSC) and co-created multiple PSC events for industry. These “mini-PFDDs” were presented to those who work on PSC drug development and clinical trials, but don’t necessarily interact with patients, to hear PSC patient experiences, ask questions directly to patients, and provide further motivation to work towards new treatments.
Collaborated with PSC advocacy groups worldwide, culminating in the first ever Global PSC Awareness Day. Planning is already underway for 2022!
Represented the voice of the Canadian PSC community at virtual international medical conferences: AASLD, EASL, CALD, and CASL.
EDUCATION: Together with PSC Partners, PSC Partners Canada participated in the ROADMAP series of webinars. ROADMAP stands for Research Objectives And Development Meetings to Accelerate Progress (Available on demand).
The goals of ROADMAP are threefold:
1) educating the patient community on the research landscape,
2) broadening the committed PSC researcher base and strengthening multi-stakeholder communication, and
3) creating opportunities for researchers and clinicians to engage in meaningful discussions with an informed patient community.
The above is leading to the patient-led international collaborative research consortium which will launch in June of 2022. PSC Partners Canada will ensure there is Canadian representation in this consortium.
SUPPORT: We continue to support the Canadian PSC community through social media and our website, highlighting Canadian-specific information and resources to complement the rich content of the PSC Partners US offerings. We connect newly-diagnosed patients with community mentors and stand ready to provide support by email or phone.
THINKING BIG WITH RARE AS ONE: Participated in numerous educational webinars and nonprofit gatherings offered by the Chan Zuckerberg Initiative's Rare As One Project. PSC Partners is one of 30 patient-led organizations chosen for this project designed to increase international research and drive progress towards the search for cures. Two members of the Canadian Board are part of this cohort.
FUNDRAISING: None of this would be possible without your volunteer and financial support. Highlights of fundraising this year include:
June Online Auction successfully raised C$30,000 with support from friends near and far thanks to all of you who participated in this fun event and to the Fundraising Committee led by Sandy VanOstrand who spearheaded this event! Remind to check out the donor list below, and support their business!
Canadian Consortium: Four families & one foundation have committed to five years of funding for the Global Natural History Study. Collectively, this transformational gift enables this critically important project to be initiated.
Year-end Matching Offer! Donations made in the month of December will be matched up to $15,000 thanks to two generous donors!
Thank you for your continued support to PSC Partners Seeking a Cure Canada over the years!