Volume 3, Issue 2
December 2021
2021 UpdatesGiving for Hope: Year-end Giving and Greeting Cards for Sale December Challenge Grant! Crafted by Community: Mocktails!  Stories from the PSC Community Events: 12/30 Virtual New Year Meetup on gather.town Events: Upcoming ZoomRoom Dates PSC Research Profile: Olivier Barbier 2022 Annual Conference
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 contactus@pscpartners.ca!
Highlights of 2021 Activities
RESEARCH : 
  • Grants: Awarded two new promising research studies, complementing the 2021 research portfolio of seven new PSC Partners (US) research projects. Read more about Canadian funded grants here. Of particular interest to the Canadian PSC commun ity 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. 

ADVOCACY : 
  • 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! See "December Challnege Grant" below!
Thank you for your continued support to
PSC Partners Seeking a Cure Canada over the years!
Giving for Hope
Year-End Giving
Many of the donations PSC Partners Canada receives are from Canadians connected to a person living with PSC. The more our friends and family know about PSC, the more they want to help.

If you are considering asking any of your community to support PSC Partners in their year-end giving, we’ve made it a bit easier by offering beautiful greeting cards with Canadian-inspired winter cover art designed by PSC mom Maggie Huang. These cards can be used to send your year-end messages to family and friends, AND if you so choose, as an easy way to ask for their support in the quest for a cure.
Details: $10 for a pack of 8 cards. Blank inside to personalize as you wish. Place your card orders here.
December Challenge Grant!

There is a fantastic matching offer on the table! Donations up to $15,000 made during the month of December will be matched, thank you to the generosity of the Ciaves Gomel and Poletto families.
As always, you can mail us a cheque or give online at chimp.net, or simply send an Interac e-transfer to contactus@pscpartners.ca! Details and links on how to give here. If you’d like to set up a customized giving webpage with your story and images, it is easy! Please pop us an email at contactus@pscpartners.ca and we’ll show you how!

Together, we will find effective treatments and a cure for PSC!
Crafted by Community
Content created by members of the Canadian PSC community
Mocktails!
By: Virve Aljas-Switzer

The question of whether to drink alcohol or not is one of the most controversial topics in liver networks. The decision is a personal one, but when you’re hosting a holiday event it’s important to provide fun and inclusive options for everyone there.

How many of us have gone to a restaurant or attended an event, and the only non-alcoholic option is a bottle of orange juice? This ignores a huge number of people who still want to sip something with tasty complex flavours. It’s time to embrace your inner mixologist in the world of Mocktails!

It’s helpful to look at mocktails as alternatives, rather than replicas of their alcohol counterparts. They won’t be identical, but you can still enjoy similar flavours. Stock some basic ingredients for your non-alcoholic mixers, like:
  • Ginger beer – Despite its name, ginger beer is usually non-alcoholic, and while it’s been sweetened, it has a nice spicy bite of ginger.
  • Bitters – Bitters are made from botanicals herbs, bark, roots, and fruit to create a potent flavoring. They can balance out the taste of a cocktail, especially when the other ingredients are quite sweet.
  • Tonic water – When you’re working with limited ingredients, invest in something special. Try artisan style tonics like Fever-Tree for your mixers to elevate the flavours.
  • Garnishes – Pay attention to garnishes. Have some fresh mint and basil on hand in case a recipe calls for muddling the herbs into the glass. Fresh fruit like citrus and berries can be added for some extra colour and flavour.

I personally used to be a gin and tonic fan. My mother prefers an occasional rum and Coke. I was happy to discover that in recent years, many companies have popped up to fill the niche of non-alcoholic distilled spirits that are similar in style to liquors like gin, tequila and rum. It’s important to note that in some cases, alcohol-free does not mean completely 0%. Some non-alcoholic beverages might have trace amounts around 0.5% depending on how they were made. 

This is not a comprehensive list or an endorsement of these companies, but a starting point to explore some distilleries either based in Canada, or deliver to Canadian addresses. There are also companies that will deliver fully mixed cocktails and many offer non-alcoholic versions. In some cases on these websites you can search for local shops that carry their products:
  • Lumette! – B.C. based company that currently makes Gin and Rum-like spirits.
  • Seedlip – distilled non-alcoholic spirits available internationally.
  • Lyre’s Co – Lyre’s has a broad range of non-alcoholic spirits, including Italian Spritz, Amaretti and Absinthe
  • Sobrii – so far, Sobrii features gin and tequila-like spirits.
  • Shaken and Stirred – This mail-order company sends a fully curated cocktail kit. The kits don’t include alcohol, so the choice to add spirits or not is up to the buyer. 

Most importantly, have fun! Even a glass of water can be glitzed up by serving in a fancy glass or goblet with a garnish. The experience of enjoying an adult drink is all about attention to detail. Please drink responsibility and do not drink and drive.  

There is no shortage of mocktail recipe ideas themed for the holidays. Here are some links to recipes to get you started:
Stories from the PSC Community
Reflections of My Journey with PSC - Sandra Holdsworth
By: Kristian Stephens
My transplant journey with PSC started in 1992. After several years of not feeling well with stomach aches and low energy levels, a new doctor ran every blood test that she thought might lead to a diagnosis. Those results came back showing high liver numbers. I was then referred to the Toronto General Hospital Liver Disease Clinic in 1995. After several tests and some investigation, in May 1995 I was diagnosed with PSC. I was told that by the time I was 40 or 50 I would need a liver transplant. At the time I was 28 and thought that’s a long way off, and none of us really know when we’re going to die. In addition to being diagnosed with this liver disease, I was also told I had IBD and that it was either Crohn’s or Colitis. So, I was 28 with a liver disease which most people thought would have been caused by alcohol or drug use. Add in my problems with my bowels, and I thought to myself what a conversationalist I would be at events & parties!
In August 1996, I was put on the waiting list for a transplant. However, by December 1996, my situation had become more critical. I was in survival mode and trying to stay healthy enough to be ready for a call that would say they had a liver for me. In February 1997, I received that special call, to receive my liver transplant, thanks to a person who made the decision to donate and their family who honoured their loved one’s wishes. While in the ICU, my jaundice disappeared, and I felt better than I had in a long time. Three months after the surgery I was starting to return to my normalcy. I then returned to work six months after the surgery.  
  
After I had recovered from my transplant, I wanted to do two things: I wanted to help “give back” by promoting Organ & Tissue Donation awareness so that more people like myself could have a second chance at life. I did this by volunteering with the M.O.R.E. Program (now Trillium Gift of Life Network) as well as with the Canadian Transplant Association. I also wanted to help mentor people, so they knew what to expect after a transplant as well and have someone to talk to about their feelings. I felt it was important to provide people with someone they could ask questions of, someone who had already been through the process. I then joined the liver mentor program at the Toronto General Hospital, even though this program is no longer active, I still mentor people today who are referred to me. 

Today, I’m looking forward to celebrating my 25th Liverversary in February. I also reflect about the things I’ve been able to do, like attend Canadian, American & World Transplant Games and the many family & friends celebrations & events I’ve attended over the years. I’m also fortunate to have met so many other fellow recipients, living donors & donor family members who make up the transplant community, many who I consider great friends and family. I still give back today helping in research with the Canadian Donation Transplant Research Program and the Organ Tissue Donation Transplant Collaboration lead by Health Canada as well as other research & healthcare related initiatives.
How did you manage the fatigue from the PSC? I had lots of fatigue and ended up sleeping all day long. This meant then that I could not sleep during the night as my sleep pattern had changed which I later learned was normal. I also learned to listen to my body and sleep when I felt tired.

What has changed regarding information and support during your journey with PSC? So much has changed since my transplant in 1997. It wasn’t that difficult to find information then on IBD as there was the Crohn’s and Colitis Foundation of Canada and many doctors who specialized in this field. But for the PSC, which was very rare at the time of my diagnosis, I first reached out to the Canadian Liver Foundation. During this time, there was no easily accessed information on it other than a research page and one article from the US speaking about it. Also at that this time, I had not heard of children having PSC.  

Also living donation had not officially started at Toronto General Hospital, it started three years later in 2000. This breakthrough really increased the number of recipients. New medications have been developed, as well as innovation and research leading to improved transplant processes and protocols.
What would you tell patients that are waiting for a liver transplant?
  • Take each day one day at a time.  
  • Surround yourself with a good support system. 
  • Listen to your body.
  • Please take care of your nutrition, mental and physical health.
  • Use your transplant team for medical information.
Want to share your story? Email us! ContactUs@PSCPartners.ca
Upcoming PSC Related Events!

Socials, Peer Group Zoom Rooms, and the 2022 Conference! See below!
You're invited!
to our Virtual-Meetup
on Thursday December 30, 8PM EST

We’ll be exploring the PSC party room in gather.town. Bring your mocktail, your fun self, and join to gather virtually before the year turns! No one is alone in this PSC journey. Let's make new connections, say hi to old friends, and greet newcomers.

Gather.town is a virtual gathering space where you meet with video, similar to a zoom meeting. It has the additional feature that you can move around the space and join and leave conversations by proximity, as one does in an in-person gathering. The format allows for unstructured conversations to happen without needing to go in and out of breakout rooms.

We're seeking a few volunteers to act as virtual greeters and help guests find their way to our party room!
Volunteer Greeters:
Sign up here.
RSVP to Meetup:
Register here!
PSC Partners’ ZoomRoom meetings are a great way for Peer-to-Peer Connections!
You're Not Alone Zone!
Join others folks from the PSC community for this supportive, helpful, fun virtual event. Space is limited. Registration required. Link to register below. The sessions are not recorded, and is intended as a safe open forum.
All at 6:00pm-7:00pm MT (8pm EST)

Tuesday, December 14, 2021
 PSC Teens, ages 13 - 20 

Wednesday, December 15, 2021
For Those Coping with Loss and Carryig on the Spirit 

Wednesday, January 5, 2022
Adult PSC Patients 18 & Over 

Wednesday, February 2, 2022
Caregivers/Spouses/Parents 

Tuesday, February 8, 2022
 PSC Teens, ages 13 - 20 
PSC Research Profile –
Dr. Olivier Barbier and Team
Author: Virve Aljas-Switzer
Recently I had the pleasure of interviewing Dr. Olivier Barbier about the research his lab is working on related to PSC. Dr. Barbier is a scientist originally from France, and now based in Quebec. He was quick to note that their research is a collaborative effort with his fellow scientists in the lab, Mélanie Verreault and Jocelyn Trottier.

Their lab was established in 2004. Early on, the main research topic in the lab was to investigate how biologically active molecules can be inactivated by different mechanisms. They had several different proofs of concept, including cancer, cardiovascular-related issues and bile acids in the context of liver disease. Gradually their scope shifted towards studying autoimmune liver disease. The lab felt there was already a lot of work being done around cancer and cardiovascular diseases, but not as many resources were being devoted to cholestatic and autoimmune liver disease.

They analyzed the “glucuronidation reaction” – a term well-known in the pharmaceutical industry. In simpler terms, it’s a metabolic pathway for the elimination or detoxification of toxins and drugs. Not much was known about whether this detoxification process was happening with PBC and PSC patients.

Dr. Barbier explained that patients with cholestatic and autoimmune liver diseases accumulate bile acid in the liver. A normal liver converts toxic molecules into non-toxic forms with a series of enzymes called UGT. When these travel to the intestine, enzymes called GUS from intestinal bacteria can make them toxic again. Reactivated bile acids are reabsorbed by the intestine, and go back to the liver.

The team received a research grant from the Canadian Institutes of Health Research in April, 20201 to identify a combination of drugs that can promote the detoxification of bile acids in the liver, while also inhibiting the intestine from reactivating the toxic properties. This would promote better detoxification and elimination of bile acids in PBC and PSC patients.

In addition to developing new drugs, they look at nutritional solutions. The idea is not to replace the drugs through nutrition, but to use nutrition to improve the patients’ response to the drug. Lest anyone think there is a miracle “Barbier Diet” on the horizon, this research is still in its very early stages.

Dr. Barbier remarked that this relationship between the liver and the large intestine can spark questions about how PSC works overall. Is PSC a liver disease with intestinal symptoms, or is it an intestinal disease with hepatic symptoms? Currently the link between PSC and IBD is not clear.

Dr. Barbier had many positive things to say about both the PSC patient and scientific communities. He feels there is a very strong sense of collaboration to reach stronger outcomes, that isn’t always the case in other areas of research. When he learned about the extent that our community does to support scientists—from patients and caregivers to fundraisers and advocates, he found it to be inspirational.

As my discussion with Dr. Barbier came to a close, he wanted PSC patients to come away with this message: “Don’t give up. We’ve never been so close to finding a cure.”

Members of the Barbier Lab
Maya Poletto sharing her PSC lived experience with Dr. Barbier's students at Universite Laval
Conference Dates and Hosts Set for
2022 PSC Partners Conference
June 2 - 5, 2022
It's with great pleasure that we announce the dates of the 2022 PSC Partners Conference to be held in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital of Boston, MA.

Watch the PSC Partners website, newsletter, and social media for conference updates.
Holiday Shopping?
Check out the amazing group of businesses who supported PSC Partners Canada auction this year, and return the love by bringing them your business!

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 provide education and support to PSC patients, families and caregivers and to raise funds to research causes, treatments and potential cures for primary sclerosing cholangitis.

PSC Partners Seeking a Cure Canada
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure
2021