|
|
► 3 Years of the Loon Duct! Welcome Matt!
► PSC Partners Canada Out and About
► Call for Volunteers
► Stories from the Community
► Canadian Research Spotlight
► $20,000 Matching Grant & Year-End Campaigns
► Exciting News - Patient-Partner Research Grant
► Online Mini-Auction Update
► PSC Partners Canada Fellowship in PSC Update
► Upcoming Events
|
|
The Loon Duct Celebrates 3 Years! |
|
A big thank you and shout out to the early Loon Duct team members, especially the instigating editorial team of Jess and Meg for getting the Loon Duct started! Joining your current Loon Duct team of Kristian and Mary is Matt. |
|
|
|
Newest Loon Duct Team Member |
Hello PSC community members! My name is Matt and I'm a new volunteer with PSC Partners Canada and I'm helping put together this very newsletter. I've been a PSC patient since my diagnosis in 2015 and over the past few years got to know many fellow PSCers through PSC Partners. I'm looking forward to meeting even more and if you're in Alberta like me please say hello! |
|
PSC Partners Canada Out and About!
|
|
With in-person academic conferences resuming after being replaced by two years of virtual meetings, PSC Partners and PSC Partners Canada slowly trickled into this year’s most important PSC-related professional conferences. Virtual Zoom meetings had become so comfortable and so much the norm that the impact of attending in-person conferences came as an extraordinary surprise. |
|
|
New ideas were exchanged at lightning speed; presentations were followed by instant discussions on their possible applications to PSC; meals became a breeding ground for effortless new collaborations; and the contagious excitement was transmitted to all those on the team who needed to protect themselves against COVID.
Ultimately, the whole PSC Partners team was injected with the new energy that in-person meetings brought about. Some of the ways the volunteers at PSC Partners Canada are working to benefit the PSC community by being out and about in 2022:
-
Meeting with Rare Disease Organizations: CZI Rare as One Convening - As part of the Rare As One grant from CZI, Canadians Mary Vyas and Rachel Gomel joined Ricky Safer, Joanne Hatchett, and Ruth-Anne Pai from PSC Partners to attend a very COVID-safe Rare as One convening in San Diego. Ricky presented on the 2020 PSC Partners PFDD meeting and Ruth-Anne and Joanne presented a poster entitled: The PSC Partners’ ROADMAP Initiative: Collaborative Efforts for the Primary Sclerosing Cholangitis Community (June, San Diego)
-
Outreach and Awareness: TAILOR Meeting, University of Calgary - Mary was invited to present at the Translational Approaches to Inflammatory Liver Injury symposium on the topic of the value of patient organization advocacy and had the pleasure of participating in the Calgary “white hat” tradition - taking an oath involving "heart-warmin', hand-shakin', tongue-loosenin'" western spirit. (Sep, Banff)
-
Patient Informed Initiatives: 6th Pediatric Autoimmune Liver Disease Symposium, hosted by CALD & A-LINK, Cincinnati Children’s - Mary participated in this day-long symposium that alongside research and quality improvement updates, included a powerful patient panel on mental health in PSC.
-
Furthering the WIND Natural History Initiative: The Liver Meeting - Mary and PSCP board member Trish Stolzfus attended the AASLD Liver Meeting where we hosted a working lunch with the regional leads from US, Europe, & Canada on the PSC Partners WIND natural history study initiative. This was the first in-person meeting of the WIND advisors since the launch! (Nov, Washington DC)
-
Public/Private Partnership with Industry, Regulators, Patients and Research to Advance Collaborative Research in Drug Development: The PSC Forum 4 - Mary and PSCP board member Fred Sabernick spoke at the PSC Forum 4, hosted by the Center for Collaborative Research. Board members Joanne Grieme and Trish Stolzfus attended in person and leadership from PSCP participated remotely. (Nov, Washington DC)
PSC Partners Canada is looking forward to hosting an exhibit booth at the Feb 28 - Mar 5 joint Canadian Digestive Diseases Week™ and Canadian Liver Meeting Conference in Halifax. PSCers near Halifax who would be interested in meeting up while we are there, please email contactus@pscpartners.ca!
|
|
Calgary White Hat Ceremony: Dr. Bowlus, Mary Vyas, Dr. Lai, and Dr. Tapper |
|
By far however, the best of all, is that, with some extra COVID precautions, in October PSC Partners Canada was able to host the first in-person Toronto meetup since 2020. This meetup was a great chance for a small group to reconnect with their fellow PSC friends and meet some new community members. It is always so powerful to experience the support we can provide each other! We look forward to more, and appreciate the willingness to comply with testing and proof of vaccination to reduce the risks that come with being together in person. |
|
Want to Help PSC Partners Canada?
We're looking for volunteers for a couple of initiatives!
1) Canada "ER Card" Initiative - graphics/printing
2) Webmaster for PSCP Canada Website - wordpress
3) Event Planning and Support
|
|
Stories from the Canadian PSC Community
PSC and the live donor Journey of Afsana Lallani
by Matt Hodgson
|
|
Many folks in the Canadian PSC community might recognize the name Afsana Lallani. That’s because she is a strong advocate for patients with PSC and more recently a vocal proponent for live liver organ donation.
Afsana was diagnosed with PSC while still in high school at the age of 16. Her PSC progressed and she was listed for liver transplant in early 2021. With no live donor match in her immediate family, Afsana took charge of finding a match and created the Donor 4 Afsana Lallani Facebook page.
The first post on Facebook reached 6,176 people and garnered 841 reactions, 566 shares and 252 comments.
Photo Credits: Ajmera Transplant Centre at UHN and The Centre for Living Organ Donation at UHN
Chronicling her journey through social media was a new experience for Afsana. Posting publicly about PSC with images capturing the reality of a PSC patient in the hospital was an important element to the campaign.
Showcasing intimate details of your health, however, isn’t easy. “I felt vulnerable,” says Afsana. “You are conscious about your self-image when you put that information out there.” After an 8-month push, punctuated with the full gamut of PSC symptoms, complications like esophageal varices and additional interventions such as an NG tube for nutrients, an anonymous donor came forward.
Learning you have a match is an emotional journey all on its own, with the mixed feelings of excitement, relief, and gratitude. Afsana recalls the level of uncertainty accompanying the news of a match. “Although you have a match, there is no guarantee that the transplant will happen until the moment surgery begins.”
Compounding the uncertainty is maintaining your physical health to the best of your ability leading up to the transplant date. For Afsana, getting an unexplained set of cold symptoms in the COVID era a few days before the transplant didn’t help. Fortunately, her transplant was a success and Afsana was full of energy walking laps around the unit a few days after the surgery. However, she spiked a fever and went into acute rejection, remaining in the hospital about a month before she was discharged. And while the road was bumpy, Afsana is going on 11 months post-transplant with no symptoms of PSC.
A positive spin-off effect of Afsana’s campaign is that families reach out, almost daily, to tap into her breadth of experience with running a social media organ donation campaign.
Afsana’s impact on promoting living organ donation began while searching for her own donor, as several individuals who sought to be a match chose a ‘non-directed’ option, meaning if they weren’t a match for Afsana, they could be a match for another patient in need. This included one donor from another province who ended up being a match for a pediatric patient at the same transplant centre.
She encourages those awaiting transplant to keep their spirits up and try to view the search through the donor’s perspective. She also wants prospective donors to know there are many resources available, including support from the Trillium Gift of Life Network.
Despite a tumultuous transplant journey, Afsana remained positive, “I’ve always been one to look on the bright side. It’s important to have a support team around me. I couldn’t have done it without them.”
|
|
Photo Credits: Ajmera Transplant Centre at UHN and The Centre for Living Organ Donation at UHN |
|
A Recent Publication Summary
|
|
A Summary of Trends in Liver Transplantation for Autoimmune Liver Diseases: A Canadian Study
by Kristian Stephens
Can J Surg 2022 October 12; 65(5). doi: 10.1503/cjs.012121
This Canadian based study looked at the outcomes of 1070 adults (age ≥ 18 years) who had a liver transplant in Canada from 2000 to 2018 because of an auto immune disease. These were patients having either primary biliary cholangitis (PBC), primary sclerosing cholangitis (PSC), autoimmune hepatitis (AIH) or two conditions (PBC–AIH or PSC–AIH). Data was collected from five Canadian transplant hospitals in British Columbia, Alberta, Ontario, and Nova Scotia. This study was done to help identify: (1) gaps and (2) areas for potential health care improvement in Canada.
Of the 1070 liver transplant surgeries for autoimmune diseases during the study period, 489 (45.7%) were for PSC, 341 (31.9%) for PBC, 220 (20.6%) for AIH and 20 (1.9%) were for those with more than one disease. During this study period, 5722 adult liver transplant surgeries had occurred at these five hospitals. Regardless of the disease type, the overall number of primary liver transplant surgeries increased over time, from 251 in 2000 to 349 in 2018. There was a significant increase in the total number of procedures for PSC over the study period. There was no significant difference in the total number of procedures for PBC or AIH, with an average of 18 for PBC and 12 for AIH across all years.
In contrast, the proportion of patients who received a liver transplant for PSC remained stable over the study period (average of 9%), whereas the proportion of those who received a liver transplant for PBC or AIH decreased over time. The increase in the total number of transplant surgeries for PSC occurred in a stable proportional trend over time. This may have been due to the increase in the overall number of transplant surgeries for other indications. This suggests that the burden of PSC related end-stage liver disease may be increasing over time in Canada.
Graft type, donor age, bilirubin level, creatinine level and MELD score at the time of transplantation were similar across the three disease groups. The MELD score at the time of transplantation increased over time. Specific overall PSC patient data from this study is in the table below.
|
|
Table 3 from Trends in liver transplantation for autoimmune liver diseases: a Canadian study, Canadian Journal of Surgery
|
|
Post transplantation survival improved significantly over time only among patients with PBC. Although recipient age differed over time for the PBC and PSC groups, it was stable for the AIH group. No significant differences in the overall incidence of graft failure were observed between the liver disease types over the study period. The 5-, 10- and 15-year incidence rates of graft failure were 11.4%, 11.9% and 16.6%, respectively, among patients with PBC; 12.1%, 17.8% and 21.1%, respectively, among those with PSC; and 6.5%, 9.6% and 15.2%, respectively, among those with AIH.
Limitations of this study include the absence of waitlist status in the Canadian database, which prevented analysis of waitlist survival and potential changes over time, and the performance of intention-to-treat analyses. Liver transplantation procedures conducted in Quebec are not included, and this may have affected the findings from a Canadian experience perspective. There were some aspects that could not be considered, such as post transplantation immunosuppression regimens and their impact on outcomes, because the data were not available.
|
|
The year's end is a time when many are doing their annual giving. If you are interested in using this matching opportunity to ask others for support at this time of giving, we can help.
-
With Facebook Nonprofit Fundraisers 100% of donations go to PSC Partners Canada. If you want your donors to receive tax receipts that are eligible for CRA taxes, be sure to select PSC Partners Seeking a Cure Canada vs US-based PSC Partners. Please be sure to let us know if you are raising funds for PSC Partners Canada through Facebook. We receive the donations, but do not know who hosted the fundraiser unless they contact us and we will want to thank you!
We know it can feel awkward to ask for help. Friends and family members may truly appreciate a tangible action they can take to show you their support, and even more so when their gift will be doubled by a matching grant!
If you are able, please support PSC Partners Canada!
This is a great time of year to check-in about your annual giving. PSC Partners Canada is currently all volunteer run and donations are used to support the mission of driving research towards treatments or a cure and supporting those affected by PSC. A 2-year research grant was recently determined, and the study and recipients will be announced once agreements are signed. For a sense of additional 2022 accomplishments, please visit this summary of the joint accomplishments PSC Partners and PSC Partners Canada; one gift of he pandemic has been effective integrated work between PSC Partners and PSC Partners Canada!
Donations made before 2023 will be eligible for a tax receipt for 2022 CRA taxes.
|
|
Thank you to the two very generous Canadian families that are making this $20,000 matching grant possible!
Are you employed?
Many workplaces are connected to the United Way, Benevity, or other similar charitable organizations through which they encourage workplace giving. As a registered Canadian charity, PSC Partners Canada is eligible for workplace giving through most organizations. You may need to specify the name and charitable number when you make your designation: PSC Partners Seeking a Cure Canada, CRA #811905165RR0001.
Many in our PSC community designate their workplace giving to PSC Partners Canada. In fact, they have also talked to their fellow employees about why donating to PSCP Canada would be a great choice. Be sure to let us know if you would like to do the same at your place of work; we can provide brochures and talking points.
And don’t forget to check if your employer has a matching program! Some will match your donations dollar for dollar!
|
|
Photo Credit: CZI Science Twitter |
|
If you follow PSC Partners Canada or PSC Partners on social media, you will have seen that very exciting news was recently announced about PSC Partners’ new Chan Zuckerberg Initiative (CZI) 4-year award! On December 1, CZI announced that a collaborative study to be conducted by PSC Partners and a Toronto multi-center research team had been selected as recipients of a unique PSC grant.
This CZI award for PSC Partners is truly unique, as this is the first time that PSC Partners is involved in scientific PSC research as an equal partner. This award is a major milestone for the PSC patient community in that what matters most to patients will take a central place throughout the study. To date, PSC Partners has pursued its mission to support novel PSC research by providing seed grants to promising researchers. Being the research grant recipient is a momentous change in the PSC research landscape.
|
|
Photo: Dr. Ruth-Anne Pai, Director of Research Strategy at PSC Partners |
|
Mary Vyas,PSC Partners Canada and Dr. Sonya MacParland, UHN at the PSC Forum 4, Dec 8, 2022 |
|
This grant is a testimony to the true partnership existing between US-based PSC Partners and PSC Partners Canada. Dr. Ruth-Anne Pai, Director of Research Strategy at PSC Partners will co-lead this project as the Patient Organization Primary Investigator (PI) with Coordinating PI Dr. Sonya MacParland of UHN. The research will focus on clarifying the cellular mechanisms of paediatric PSC and identifying potential cellular targets for effective therapies. (Past Loon Duct issue highlighted Dr. MacParland for her exciting ongoing single-cell PSC research.)
Other than the co-PIs coming from the US and Canada, what makes this news extremely relevant to PSC Partners Canada? The proposal includes two additional patient collaborators, Mary Vyas and Rachel Gomel, both members of the PSC Partners Canada board of directors. For several years, Mary and Rachel, along with Dr. Katie Bingham, have been collaborating with Dr. MacParland as integrated patient collaborators on an important, large-scale PSC study. It is precisely the productive relationship existing between the research team and PSC Partners Canada that lay the foundation for our study proposal to CZI.
For the next four years the research team is committed to following specific patient engagement plans including education events and conferences to disseminate the project learnings to the patient community – that means you! You can expect several new annual events to be held in Toronto in the next four years. We are excited!
PSC Partners funding will be allocated to support Dr. Pai’s research collaboration, education programs, and resources for this large study. The funds will also go to Toronto institutions that are collaborating in this study. Members of the project team come from many institutions in Toronto: University of Toronto, The Hospital for Sick Children, UHN, Toronto Centre for Liver Disease, Ajmera Transplant Centre, and Mt. Sinai Hospital.
PSC Partners and PSC Partners Canada will continue its mission by raising funds to award grants to novel PSC research that can bring us closer to a cure.
In CZI’s words, “When patients are partners in biomedical research, we accelerate science and the path towards treatments and cures for rare disease.” It is exhilarating to have entered this new world of patient-partnered scientific research and to have played a role in attracting significant funding for important PSC research.
|
|
It all started with a thought . . .
Brandon heard his friend at TD MBNA mention they had a signed Leafs jersey they were making available to charities that was leftover from their own promotional event. Rather than just thinking that was cool, Brandon thought of PSC Partners Canada and asked if it would be possible to give that jersey to PSCP Canada for their auction . . . and so began our Mini-auction.
We pulled in Maggie Huang who had helped organize the auction last year and she had a beautiful winter painting that she was willing to auction off with the jersey. Jessica Travis helped out with some social media posts and then some of you came into the story as you bid on the items. Before long we had raised $642!
We will have our big online auction in Fall 2023 and it isn’t too early to start thinking of ways you can contribute. Be like Brandon and think of the connections you have with restaurants, stores, hotels or events and let Fundraising Chair Sandy VanOstrand know what you can contribute to our auction.
We have already had people offer exquisite handmade jewelry, handmade holiday cards and a painting.
|
|
PSC Partners Canada Fellowship in PSC and Autoimmune Liver Disease Update
Introducing Dr. Kristel Leung
The recipient of a PSC Partners Canada-sponsored fellowship to develop Canadian PSC clinical & research expertise
|
|
|
|
Dr. Kristel Leung originally hails from Vancouver, where she completed an Honours Bachelor’s degree in Physiology and received her MD from the University of British Columbia. She then went on to Ottawa for Internal Medicine training prior to moving to Toronto to complete her Gastroenterology training. |
|
Currently, she is undergoing advanced training in Hepatology with a focus on immune-mediated liver diseases while pursuing graduate studies in Clinical Epidemiology at University of Toronto. Her current research focuses on understanding trajectory and risk factors for complications in primary sclerosing cholangitis (PSC), alongside Drs. Hirschfield and Gulamhusein and their colleagues in the Autoimmune Liver Disease Program. She aspires to be a future Canadian expert and clinician-scientist in advanced liver disease.
Why did you apply for this Fellowship?
I applied for this Fellowship because I have long carried an interest in immune-mediated diseases, since I first began my medical training. I find the liver fascinating in its multi functional capacities and the pathophysiology that affects it. I believe that there is much to learn from studying liver diseases that can greatly impact those suffering from them.
How did you first come to hear about the Toronto Centre for Liver Disease and this fellowship opportunity?
In looking to get involved in research opportunities when I was starting my Gastroenterology fellowship here in Toronto, I came across Dr. Hirschfield’s name and immediately was drawn to his research interests and his enthusiasm for furthering patient-centred care. Since meeting him, as well as Dr. Gulamhusein, we have worked on numerous projects together, including a review of primary biliary cholangitis and a study examining how primary liver disease and social determinants affect outcomes in a mixed donor liver transplant program.
Read the complete interview as part of the Impact Report prepared for PSC Partners Canada by the Toronto Centre for Liver Disease.
|
|
Upcoming PSC Peer Group Zoom Rooms!
|
|
PSC Partners’ ZoomRoom meetings are a great way for Peer-to-Peer Connections!
|
|
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
Wednesday, January 11, 2023
|
|
|
Watch the PSC Partners website, newsletter, and social media for updates.
|
|
FOLLOW PSC PARTNERS CANADA ONLINE!
|
|
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
|
|
|
|
|
|
|
