Volume 1, Issue 2
December 2019
Year-End Fundraising Fall Community Meetup PSC Around the World Who is Rachel Gomel? PSC Patient Registry Great News Crafted by Community Feature Article: The Basics about Canadian Clinical Trials Involving Drugs The Loon Poll Reminders How to engage with PSC Canada
We are so pleased to announce that we once again have a year-end donor who is offering a matching challenge grant!

Any donations made to PSC Partners Canada that are received before December 31, 2019 will be matched, up to $30,000! Click here to read more about this matching donation!

We are also in the process of forming a Fundraising Committee. If you would like to join and help us craft a fundraising strategy for 2020, please send an email to ContactUs@PSCPartners.ca

To help with this year-end fundraising push, we’ve set up a Tool Kit on the PSCPartners.ca/fundraising page. There you can find:

  • A sample letter/email you can copy and personalize to send to friends and family asking for support. Thank you Ken Wright and Mee Mee Chan for sharing your letter!
  • A link to the year-end fundraising site with instructions on how to set up your own personal page to share with your community. On this page, you can tell your story, share pictures, and track donations.
  • Ways to ask for support through workplace giving campaigns - Benevity and United Way.
  • Basics on how a charitable gift can affect your personal taxes! Thank you Tom Wright!
  • Information on successful events hosted by other Canadian PSC community members - pub nights, parties, letter writing, etc.
  • A link to the amazon.ca associate search bar. If you are shopping on amazon dot ca, use our link for your search, and make a purchase within 24 hours from clicking through, a % of your purchase will go to PSC Partners Canada.
We will be working with a theme about the Loon this year, including the donation of a beautiful custom artwork by Hartley Thomson. Hartley is a member of the Canadian PSC community. Check out more Art by Hartley here .

A First Nations legend says that to see a Loon means a dream will come true or a wish will be granted. We know that a wish of all affected by PSC is to find a cure.

Your donations, and your fundraising efforts will help us move towards that goal! 
Fall Community Meetup
On September 29th, PSC Partners Canada hosted their second Meetup in Toronto, Ontario at the Centre for Social Innovation .  We had 58 attendees from all over Ontario come together and were joined by guest speakers Dr. Gideon Hirschfield, Dr. Sonya MacParland and Albert Fung from the Toronto Video Atlas of Surgery .
After the initial meet and greet, our first speaker was Dr. Gideon Hirschfield from the Toronto Centre for Liver Disease at Toronto General Hospital. Dr. Hirschfield is no stranger to our organization as he has attended many conferences and is a member of the Scientific Medical Advisory Board of PSC Partners Seeking a Cure. Dr. Hirschfield gave a general overview of PSC including it’s progression in patients, clinical trials and the process for transplantation. Please click here to watch the video of his presentation.

Our second speaker was Dr. Sonya MacParland who provided information about the cellular liver map and how it can be used to better understand PSC. She is part of a research team who will investigate how liver immune dysregulation drives liver diseases. They will also examine how the liver immune environment can be therapeutically manipulated using nanoparticles to slow or reverse ongoing damage. Please click here to watch the video of her presentation.

We took a break for lunch and had the opportunity to chat with each other and connect over some delicious food and dessert. We even had liver shaped cookies provided by Passion For Desserts .
After lunch we had the pleasure of hearing Albert Fung, from the TVASurge, present virtual liver training modules. Albert brought in Virtual Reality headsets that are connected to a software that simulates various procedures such as liver transplant and resection. One of the purposes of the software is to train doctors to perform these procedures with the data uploaded from real patients’ imaging. Meetup participants had the rare opportunity to try the virtual reality system and perform these procedures themselves! Videos showing various live surgeries and human anatomy can be found on the TVASurg website (WARNING - graphic content) .

Breaking news! Albert will be presenting the virtual liver experience at the the 2020 PSC Partners annual conference.Join us in Denver in April to give it a try.

The meetup was a great success with help from our many volunteers and our other sponsors we have not already mentioned: CymaBay Therapeutics and Turtledove Bakery.

Have you heard?
 The presentations from the meetup are now online! Check it out here
Thank you for the support!
We are grateful to the sponsors of the 2019 Toronto PSC Meet-Up.
The meetup was a good mix of learning, visiting with friends and gathering around delicious food. Scroll to the bottom of the newsletter to enjoy some more snaps!
We are building out our volunteer committees!
If you are interested in getting involved, please send us an email at: ContactUs@PSCPartners.ca
We have immediate needs for:
  • website content assistant (experienced with WordPress )
  • communications services (specifically relating to health and government relations)
PSC Around the World

A few months ago we had some special visitors come to Canada. Kerrie and Bek Goldsmith from Australia enjoyed a visit with PSC Partners Seeking a Cure Canada President Mary Vyas in Toronto and Board member Rachel Gomel in Montreal. You might recognize a younger Bek and her mom Kerrie from the PSC Partners Awareness Video (see below or click here ). Bek was diagnosed with PSC when she was just a child and survived a transplant, among other health challenges. They both attended two PSC Partners patient conferences in the US and we are pleased to announce that Kerrie has started a PSC support group in Australia! 
“One of our long term goals is to create a database and network of people living with PSC in Australia, thereby allowing people to connect with one another. We hope that you will become a member and join us on our journey to make PSC more widely known in Australia, to provide information to those already experiencing PSC, and for those to yet be diagnosed.” - Kerrie Goldsmith

They held their first forum in September and had close to 20 attendees. It was a great afternoon full of information, note taking and questions. For many of them, this was their first time meeting someone else with PSC. What a great milestone! They have already launched their website, just click the link to check it out: PSC-Australia.com.au

As the goal behind this website is to gather and provide links to information about PSC and other related issues, it is our hope that users of this site will contact us to suggest other links, sites, support groups and so forth that can be added. Together we can build an Australian flavoured springboard to knowledge about PSC.” - Kerrie Goldsmith
Who is Rachel Gomel?
Author: Jessica T.
If you have ever met Rachel, there’s no way to forget her compassionate nature. She is the first to say that she does not care for public speaking. Do not let this disinclination fool you, she is fierce with determination and routinely speaks publicly and powerfully for PSC patients! We would like to introduce you to Rachel Gomel, one of your PSC Partners Canada board members, and the force that drives the PSC Partners Patient Registry.  

Rachel is the Director and Coordinator for PSC Partners Patient Registry, and was instrumental in the development, launch, and growth of the registry. She serves on both the Board of Directors for PSC Partners Seeking a Cure and PSC Partners Seeking a Cure Canada. 

Rachel attended her first conference in 2007 after finding PSC Partners Seeking a Cure through an online search. After volunteering only a short period with the organization, she was invited to join the Board of Directors. Rachel holds a Master’s degree in English Literature from McGill University, Montreal, Canada. Her Ph.D. work at McGill University was cross-disciplinary (in Philosophy of History, Comparative Literature, and Literary Criticism) and earned her three Canada Council awards. She left McGill University shortly after her third child was born. Her husband, three adult children and their families are the center of her life.

When asked what her favourite part about being involved with PSC Partners was:
“I love the feeling of family and support in our PSC Partners community, our can-do attitude, and the passion and compassion that guide our every move.”

CLICK HERE to read Jessica T. interviewing Rachel about her work with PSC Partners!

Great News! There are currently two clinical trials recruiting or soon-to-be recruiting for PSC patients in Canada!

Visit here to find specifics about these trials, Canadian recruitment sites, and a letter from one sponsor to PSC patients.

If you are interested in participating, speak with your doctor. If you would like to receive direct email notice about trials for which you may be eligible, please consider joining the PSC Partners Patient Registry .

Here’s your chance to help speed up PSC research and provide a piece to the puzzle.

Join the registry. You can sign up as a patient or patient guardian. It takes less than 30 minutes, and it makes a world of difference!

If you have already joined, then please spread the word to others and encourage them to take part!
If you have any questions, please contact the PSC Patient Registry at RegistryCoordinator@pscpartners.org
Crafted by Community
Content created by members of the Canadian PSC community
The Basics about Canadian Clinical Trials Involving Drugs
Author: Kristian Stephens
What is a Clinical Trial? 
A clinical trial is a type of study that uses human volunteers to determine whether a new drug, device or procedure, when used, is both safe and effective for people. When scientists develop new drugs, the first tests are called pre-clinical studies. These are done using tissues or animals. If these results are promising, the next step is a clinical trial. Usually these trials are planned to improve medical knowledge related to the diagnosis, treatment and prevention of diseases or conditions. They are important to better understand PSC and to develop effective treatments as they can have potential benefits. Keep in mind, clinical trials also have risks as usually a limited amount of information about the product’s safety and ability may exist. 

Who is Involved in Clinical Trials?
Before conducting a trial, the sponsor who is conducting the research (examples: a hospital, a drug company, or a university) submits an application to Health Canada to make sure:
  • the use of the drug being studied is appropriate
  • there is minimal risk associated with the drug’s usage
  • the best interests of the volunteers are upheld
  • the trial’s objectives are likely to be meet

Clinical trials in Canada are done under strict conditions as laid out in Canadian Regulations and they must follow good clinical practices. They are led by a principal investigator who, by Canadian law, has to be a medical doctor or a dentist. These doctors may also have a research team that could include other health care professionals.

How Long do Clinical Trials Last?
The length of a clinical trial will depend on what is being studied. Volunteers are told how long the study will last before they enroll.

The Four Phases of Drug Clinical Trials:
Clinical trials are done in phases where each one has a different purpose:
Phase 1 - An experimental drug is on a small group of volunteers for the first time. The purpose of this phase is to assess the drug's safety, determine a safe dosage range, and identify any side effects.  

Phase 2 - The drug is given to a larger group of volunteers (usually 100 or more) to obtain initial data on its effectiveness for specific disease or condition, further assess its safety, and to determine the best dose.

Phase 3 - The drug is given to even larger groups of people (usually 1,000 or more) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and to collect information that will allow the drug to be used safely on the market. Note that for PSC, because of the rarity of the disease, the number of enrolled patients would be much smaller. This is one reason that the clinical trials currently recruiting are at multiple medical centres.

Phase 4 - These trials are done after the drug is approved and is on the market. The purpose is to gather information such as the drug’s best method, and the long-term benefits and risks.

Potential Benefits of Clinical Trials:
Should you volunteer for a clinical trial, you may be helping others by advancing medical research. There could also be these personal benefits:  
  • you may get early access to a new promising treatment.
  • the treatment may help you with your medical condition. Even if you are not cured, your quality of life may improve.
  • you may get additional access to health care because of the time you will spend with the research team involved in the study.

Potential Risks:
If your reason for being in a clinical trial is to get access to a new treatment, note that this may not happen. Clinical trials often compare a new drug to an approved drug that is already on the market. In addition, you may get a placebo which is a treatment with no active ingredients. In many cases, volunteers are not told which treatment they are getting in order to generate impartial results. Some of the potential risks of being treated with a new drug could be:
  • it may not help you as it could be less effective than an earlier treatment. In the case of PSC, we currently have no approved treatments. 
  • there is also a risk of serious side effects (short-term & long-term) as the safety profile of a drug going through the trials is not as well understood as an approved drug. 
  • a clinical trial can take up your time for travel, tests, and even hospital stays.

Rare Diseases:
PSC qualifies as a rare disease and as such, Health Canada offers a potentially accelerated pathway to drug approval. The idea is that for rare, serious diseases with no treatment, the risk/benefit trade-offs are different and the accelerated pathway recognizes this. You can find out more about the accelerated pathways here: Canada’s regulatory approach to drugs for rare diseases: orphan drugs

For more information on clinical trials related to PSC, please visit: PSC Partners-Clinical Trials

The sourc e of this article is Health Canada at: Clinical Trials and Drug Safety
The Loon Poll
Lulu has another question for you!
What do you find to be the most difficult part about fundraising?
Not knowing how to approach the topic with people in the first place
Not sure about how to fundraise. I don't have any ideas of how to do it!
Not having the time to put in to holding an event or drop off letters
Lulu has a task for you!
"Meg and Jessica’s Bitmoji cartoon characters are playing hide and seek in this issue of the Loon Duct! Can you help me find them? Those two are so loony!”
Check out the next issue of the Loon Duct for the answer!
Reminders for our Loon Duct followers!
16th Annual PSC Partners Conference Denver, Col. • April 24-26, 2020

Check out the the Details:
PSC Partners Canada has a YouTube channel ! The presentations from the September meetup are now online!
Check out the presentations > HERE <

Good stuff in The Duct Newsletter!

Our affiliate in the U.S., PSC Partners Seeking a Cure, attended The Liver Meeting® 2019 hosted by the American Association for the Study of Liver Diseases (ASLD) .  Our Canadian leaders were there as well (Mary & Rachel)! This annual conference attracted more than 10,000 medical providers and many others from the international liver-wellness community! REMINDER: AASLD has uploaded slides highlighting some key presentations from the meeting which provide insight for patient care and ongoing research. Read more in November's The Duct .

Engage with us!
Check out these three on Twitter :
Dr. Gideon Hirschfield: @AutoImmuneLiver

Dr. Sonya MacParland: @MacParlandSonya

PSC Support Australia

For those following PSC Partners Canada on Facebook , you may have seen your Communications Team (a.k.a the Loonies) meeting together on PSC Awareness Day 2019!
PSC Partners Seeking a Cure Canada wants to connect with you!

Like us on Facebook , follow us on Twitter , and check out our website !
Once you have liked us on Facebook there is one more step to make sure you see our posts! Use the SEE FIRST option.
To use SEE FIRST on your personal computer:
  1. Go to PSC Partners Canada Facebook page
  2. Hover your mouse over the Following button near their cover photo
  3. Select See First
To use SEE FIRST on your mobile device:
  1. Go to PSC Partners Canada Facebook page
  2. Click/tap the three dots (...) near the top of the page
  3. Select Following
  4. Select See First
September Meetup Photos!
PSC Partners Seeking a Cure Canada
is a Canadian registered charity affiliated with
PSC Partners Seeking a Cure.

Together, we have a shared mission 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
(647) 848-6953 |  ContactUs@PSCPartners.ca PSCPartners.ca
585 Dundas St East, Suite 300 • Toronto, Ontario • M5A 2B7 • Canada