Volume 2, Issue 4
June 2021
► Canada Silent Auction: Hope for PSC is in Our Hands PSC & Vaccines: Talk to your Doctor! ► The Loonie Team is Growing ► Stories from the PSC Community: Andy's Story ► Bill C210 Passes ► Inspirational Athletes ► 2022 Conference ROADMAP 101 Meeting: Let's Talk Symptoms
Check out the first
PSC Partners Seeking a Cure Canada
online auction fundraiser
The auction runs June 11th - 20th to raise funds for research grants for novel PSC research.
PSC Partners Canada has received many creative donations for the auction, everything from handmade items, sports memorabilia, photo shoots, vacation cottages and much, much more! 

Please invite your friends, family, coworkers and anyone else in your community to join us at the auction site to see and bid on all the amazing donations we’ve received. This is an opportunity for your community to do some shopping, help support you, and help fund research for PSC. This is an opportunity for your community to help support you and help us find treatments for PSC.
This event could not take place without the community coming together! Many thanks to the Fundraising Committee (Sandy VanOstrand, Maggie Huang, and Jessica Travis), to the individuals who solicited donations, to the businesses and individuals who donated goods and services.

Questions?
Please contact the auction chair Sandy VanOstrand at SandraVanOstrand@gmail.com.

Thank you for your continued support to PSC Partners Seeking a Cure Canada over the years!
Talk to your Doctor Before Removing your Mask
Did You Know?
PSC Patients May Still be at Risk, Even After Vaccine...

As always, PSC Partners and PSC Partners Canada do not give medical advice. Please contact your medical provider(s) with questions and concerns.

There are questions about the antibody response to the mRNA COVID-19 vaccines (Pfizer and Moderna) in the PSC patient population. The clinical trials for COVID-19 vaccines included few subjects with chronic liver disease, and the vaccine response is not known for these populations.
A recently published study on solid-organ transplant patients, which included liver transplant patients, has raised additional questions about antibody response to the COVID-19 vaccine for those #PSC patients taking immunosuppressive drugs for IBD, AIH, and other indications. You can find the article here.

For more information on this topic, you can also go here.
The Loonie Team Keeps Growing!
Jessica, Meg, Kristian & Jenn have a new team member!
Hi! My name is Virve, most people pronounce it something like “Veer-va”. This is my second time contributing to the Loon Duct. I was diagnosed with PSC around 8 years ago. I’ve been lucky to live in places like Halifax, Nova Scotia, New York City and now I live with my family in Toronto. My first children’s picture books were published in 2020, with more coming this year. I feel that PSC is a part of who I am, but it doesn’t have to define your life.
Stories from the PSC Community
Andy's Story - Andy Dench
Once upon a time, after quite a few years of testing, Andy was diagnosed with a disease called Primary Sclerosing Cholangitis or PSC. PSC is a disease so rare that not many have even heard of it! It is a disease so rare that not only is there no cure, there is no treatment and it seemingly comes with very little hope, too. Andy of course needed to know more about the disease he's going to be forced to live with so he turned to ‘Dr. Google’ and began his research. One search for PSC and he was immediately bombarded with page after page after page of the awful realities of his fate with PSC, including when they should expect to die. When the answer to that question is not a big number, I’m sure you can imagine it hit him like a tonne of bricks and put him into a tailspin of despair causing a lot of anxiety, depression, and fear. 

It all seemed so hopeless and scary and incredibly lonely. Until... 
One day, when Andy was deep in his tailspin into the darkness he stumbled across a flicker of light! A Facebook support group called ‘PSC Partners’ who had both a public group where anyone can read and learn about PSC, and a private group for only for those who actually live with it. Almost immediately Andy breathed a sigh of relief - had he perhaps finally found a place where he wouldn’t feel so alone? Shortly after joining, they got a private message from a group member reassuring them that they were definitely not alone and that there will always be members available to talk or to answer any questions they might have. This was not like any other Facebook groups they had tried before...this felt hopeful, which was a bit shocking given the reality of PSC, but nevertheless he was very happy to have found them. 
As time went by Andy discovered that these groups were made up of the most caring, understanding, knowledgeable and helpful people he'd encountered on his journey so far. He read post after post of people asking questions about things he was also experiencing — and everyone was full of supportive, uplifting and helpful comments! Every single time someone in one the groups reached out for help, they were always met with such tremendous support that was often even accompanied with private messages from group members offering phone numbers should they ever want to talk to someone who would ‘get it’ in a way that no one else can...unless you live it. He saw how close the PSC community was, coming together in their shared feelings, understanding and experiences with PSC. Of course some of the posts he saw scared him: like people talking about some of the more advanced symptoms that he had not experienced or about liver transplants, or even about PSC friends they had lost. Yet other posts lifted their spirits: like people talking about having lived long full lives despite having PSC and others about all the things they'd accomplished despite of having it. But a common thread he saw throughout all of the posts was that every group member really did experience a very strong sense of community and support - a sense of family. It did not take long before that sense of panic eased - of course it is still there, it will never fully go away, but it doesn’t feel so intense anymore. 

These Facebook groups have been a lifesaver for a lot of people; a literal beacon of light in the darkness of this diagnosis. I have never been one to reach out to anyone, for anything, but this time I did, and it is my sincere hope that anyone who has PSC or is a caregiver/family member of someone who has it, does too. I strongly recommend checking the groups out and reaching out to the people. Allow yourself to feel the love and support that they’ll give you. The experience of being in contact with other people who completely understand what you're going through is so very important. Especially being locked-down during these Covid times.

If you are interested in joining these Facebook groups, use the buttons below.
PSC Partners Seeking a Cure (Open) Support Group
(anyone can see and apply to join)
PSC Partners Seeking a Cure (Closed) Support Group
(private and only members can see and post)
Changes Coming for Organ and Tissue Donor Registration Across Canada
On June 8, 2021, the Private Members Bill C-210 passed its third reading in the Senate in Ottawa. This is after it passed its third reading unanimously on May 12, 2021 in the House of Commons. This Bill was initially sponsored by Len Webber. This enactment amends the Canada Revenue Agency Act to authorize the Canada Revenue Agency (CRA) to enter into an agreement with a province or a territory regarding the collection and disclosure of information required for establishing or maintaining an organ and tissue donor registry in that province or territory. This would allow a question of organ and tissue donation to be placed on CRA’s income tax form alongside the Elections Canada question. Currently, the CRA only allows the use of these income tax forms for the administration of taxes. Therefore, to allow this question regarding organ and tissue donation to be placed on the tax form, a legal exemption was needed to be created.
Inspirational Athletes
Profile: Jillian Best
At the time of this article, the 2021 Summer Olympics in Japan are still planned to take place later this summer. Our thoughts have turned to athletes, who by their very nature are sources of inspiration. They work hard to achieve personal and professional goals they set for themselves. What happens when an athlete is faced with physical and mental challenges that can come with liver disease? 
We met two athletes that have not only faced these challenges, but have thrived and set new personal goals. This month’s feature athlete is Jillian Best, who took time to share some insights into her experiences before and after a liver transplant.

In addition to running her own hairstyling salon, Jillian is training for a charity swim across Lake Ontario later this year. She has a disease called Hereditary Hemorrhagic Telangiectasia (HHT). This disease can cause malformed blood vessels in various organs, and in Jillian’s case the HHT affected her liver. This led to liver failure, and then a liver transplant. Ms. Best lives in Ontario with her husband Zach, and their two pugs Frankie and Beans.
Has sport always been a part of your life?
I have been involved in some kind of sport my whole life. As a kid I grew up swimming and doing acrobatics. Later I got more into running, and eventually added strength training to my routine. Now I mainly swim, but I also regularly enjoy running, strength training, prone paddling and hiking.
 
Sport and competition are a huge part of my life. They create balance for me. I set aside time for myself to work on discipline, strength (mental and physical) and endurance. I enjoy pushing myself to new heights and distances. Competition gives me a goal, motivation and reason to train. I enjoy testing my abilities against others, and even for myself...I like to see what I am capable of.

How did you feel when you received your diagnosis?
I received my diagnosis at a young age of 15. I don't think I fully understood at the time how serious it could be, or that I would end up needing a liver transplant to live. My mother had her first liver transplant from HHT, which is when the rest of the family got tested for it. I thought if it ever affected me it would be years away, as an older adult. I experienced my first serious symptoms of HHT when I was only 21 years old.

Fatigue is one of the main symptoms that liver disease patients live with. How did you overcome that?
It took me a while to realize that my fatigue was abnormal. I napped any time I had the chance. When I was waiting for my liver transplant, I had to stop working because I was too tired and sick to do much of anything. The liver transplant allowed me to overcome the fatigue.
How did you find the motivation to start rebuilding muscle mass and getting back in shape?
I was sick for a long time, and lost all of my muscle, so I was eager to get back into shape as soon as I could. When I was recovering from my transplant, I learned about the World Transplant Games. I saw that swimming was a sport in the Games and I instantly decided this was my goal. I wanted to compete at the next games in Malaga, Spain in 2017. They were only a year and a half away from when I received my liver transplant. Two months after my transplant I got back to the gym, starting working out and swimming at the YMCA. 

How did you become involved in the Transplant Games?
A volunteer handed me a World Transplant Games brochure when I was still in the hospital. After I competed in Spain, I was hooked. The following year I competed at the Canadian Transplant Games in Vancouver BC and won five gold! I trained extremely hard for the games in New Castle, England in 2019. I came away with five golds and set all new world records in my age group in swimming.

Tell us about Move For Life, and your upcoming swim in Lake Ontario.
Move for Life is a foundation I created with friends who have either had a transplant, donated, or have been affected by organ donation in some way. We promote active living post-transplant, and to honour our organ donors. We want to shorten the waitlist for an organ transplant, and we plan to do this by raising money and awareness) to support hospitals to equip them with the newest technology. ARP - abdominal regional perfusion can help to increase the donor pool of organs to be transplanted. 
 
Each year we want to hold a sporting event involving a transplant recipient (or recipients) to help raise funds and awareness. This also shows what life after transplant can be, that organ donation really works, and can give life back to an individual. 
 
This year is our first event and year as a charitable foundation. To kick it off, I will be swimming across Lake Ontario without stopping, on August 3rd. This is a 52 kilometer swim and could take anywhere from 16-20 hours! The swim will start in Niagara-on-the-Lake, and finish in Marilyn Bell Park, Toronto. We're still looking for sponsors.
 
Author’s note: You can learn more about Move for Life at MoveForLifeFoundation.com or visit this link for a video about the swim.
What would you want to tell patients waiting for a transplant?
My advice would be to try to stay as positive as possible, take one moment at a time. Try to find things that bring joy, even if they are small. I did a lot of colouring and painting when I was sick. We are a lot stronger than we even know. Never forget that. 
 
This obstacle will make you a stronger, more resilient person, and bring a new perspective to life and how precious it really is. Stay as active as you can without overdoing it. The stronger you are going into the transplant, the better you will recover. I want to encourage others to live their best life, surround yourself with positive people that lift you up!
Watch for the next Inspiring Athlete Profile where we spotlight weightlifter and motorcross rider Jackson Blizzard! In the next Loon Duct!
Conference Dates and Location Set for
2022 PSC Partners Conference
June 2 - 5, 2022 in Boston, MA USA
It's with great pleasure that we announce the dates of the 2022 PSC Partners Conference, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital. 

We hope you'll join us in Boston, Massachusetts, Thursday, June 2 - Sunday, June 5, 2022.

We are still formulating plans for the conference kick-off, which may start early in the day on Thursday, June 2, so we recommend holding off on making plane reservations until the agenda is finalized.

A link to make reservations at the conference hotel, the Burlington Marriott, will be available ten months prior to the conference. A special rate has been negotiated. Please don't reserve a room until our special conference link is live.

Watch our the PSC Partners website, newsletter, and social media for conference updates.

See you soon in Boston!
Join us for
Upcoming Webinars
as part of the
PSC Partners
ROADMAP Initiative
In-Depth... Engaging... Thought-Provoking

Visit the EVENTS page on the PSC Partners website
for registration links to upcoming Webinars.
► Wednesday, June 16, 6:00-7:30 p.m. MT (8:00-9:30 p.m. EST)
ROADMAP 101:
Let’s Talk PSC Symptoms
Everything you don’t have time to tell your doctor! Describe your symptoms, and learn how they will inform successful drug development.

Thursday, July 8, 6:00-7:30 p.m. MT (8:00-9:30 p.m. EST)
ROADMAP 201:
Developing a Patient Reported Outcome Measure with the PSC Patient Voice
Come to the table to help us formulate a more informative a PROM (patient reported outcome measure) for PSC. *Session 101 is not mandatory to attend at Session 201


What is the
PSC Partners ROADMAP Initiative?
ROADMAP is the acronym for Research Objectives and Development Meetings to Accelerate Progress.

This initiative is the outcome of hard work from the past few years from the PSC Partners community which has included the PSC Partners patient registry, and the Patient Focused Drug Development Forum.
ROADMAP’s goals are to accelerate progress to find therapies and a cure for PSC by
  • educating the patient community on the research front developments.
  • expanding the researcher base and strengthening multi-stakeholder communication.
  • creating opportunities for researchers and clinicians to engage in meaningful discussions with an informed patient community.

This initiative is about expanding the role of the patients in PSC research and drug development. This is about everyone within the PSC community coming together in a collaborative approach.

Why involve PSC patients in this initiative?
PSC patients:
  • bring their trustworthy relationship with the medical community;
  • can best describe their symptoms and quality of life; and
  • bring the urgency of finding effective treatments and a cure.

Logistically these ROADMAP discussions will occur over a series of webinars that will occur from April 2021 to April 2022. They will focus on six major topics which will represent the current gaps in PSC research. Two webinars for each topic will occur. The “101” sessions will be community focused while the “201” sessions will be multi-stakeholder focused.  The topics for discussion will be based upon input from you, PSC Partners leadership, the scientific and medical advisory committee, and from past PSC Partners grant recipients.  All stakeholders are welcome to attend these webinars.

For more information, please visit the ROADMAP initiative page on the PSC Partners website here.

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