Volume 2, Issue 2
December 2020
Season's Greetings Virtual Holiday Party Patient Focused Drug Development Wrap-Up Crafted by Community - Creations by Community Fundraising COVID-10 and PSC? News from US PSC Partners MASK-ERADE!

This event is a bit like a cross between a video game and a Zoom meetup. Free and open to any in the PSC community who want to drop in and say hello!

We miss our meetups! We hope to see you at this event.
PFDD Wrap-Up: On October 23, PSC Partners hosted an important full-day meeting which presented an opportunity for the US FDA, pharmaceutical leaders, researchers, and clinicians to hear directly from PSC patients in order to more fully understand the urgent need for treatments and a cure for PSC.
If you were unable to attend the live meeting, please find the time to view this important resource.

  • A virtual online meeting hosted by PSC Partners and funded entirely by community financial support.
  • Appearances from FDA, PSC experts, patients, and caregivers.
  • Interactive patient panels discussing call-in and write-in comments.

Mission: To inform the FDA, drug developers, and researchers about the disease burden of PSC patients.

What is a PFDD meeting?
Patient-Focused Drug Development (PFDD) meetings were developed in response to the FDA's initiative to incorporate the patient voice throughout the drug development process. The US FDA recognizes that, "Patients are experts in what it is like to live with their disease or condition and use of available treatments." This was a one-time opportunity for our PSC patient voices to be heard by these important stakeholders and let them know why they should focus their efforts on us. Why does this matter for Canadians? The US FDA often approves new treatments before an application is submitted to Canada Health for approval. While not the only pathway to new treatments for Canadian patients, this is an important one.

Why should I watch the recording now if the event is over?
  • Hear honest testimonials of what PSC patients have experienced
  • See results from the recent Our Voices Survey
  • Learn about what PSC Partners is advocating for with regulatory agencies such as the US FDA
  • Learn about how the Patient Registry is being used and how important this tool is for drug development. It might even convince you to join if you haven't yet.
  • Discover excellent resources for communicating various aspects of PSC
  • Separate sections for impact on daily lives, experience of symptoms, advanced disease, current treatments, pediatrics, clinical trials, and hopes for future treatments
  • Visit virtually with members of the PSC Partners and PSC Partners Canada teams, and visit virtually with patients and caregivers from the US, Canada and around the world
  • Potentially "meet" other community members with whom you'd like to connect
Crafted by Community
Highlighting members of the Canadian PSC community

Recently Published Works by Members of the Canadian PSC Community!
Meet Virve! Virve Aljas is co-founder and author at East York Press. Virve has recently published three beautiful picture books. Find out more by following @VirveAljas and @EastYorkPress1 on twitter. East York Press is an independently owned publisher in Toronto. Starting small with self-publishing. First three titles launched in 2020! eastyorkpress.com/books
Meet Laura! Laura Bradbury, based in Victoria, BC, has recently published her first cookbook. You may know Laura's memoirs from her life in France, and now she's joined forces with Rebecca Wellman to bring us Bisous and Brioche, Classic French Recipes and Family Favorites from a Life in France by Laura Bradbury (Author), Rebecca Wellman (Author, Photographer). A book of recipes from the author of the Grape Series memoirs that will transport you to a rustic French cottage surrounded by vineyards, no matter where in the world your kitchen might be. laurabradbury.com
Meet Katie! Dr. Katie Bingham, MD, PhD and colleagues have just published an open-access review exploring the mental health needs of persons with autoimmune disease during COVID. The authors review existing evidence and propose a framework for future research and clinical care.

Exploring the Mental Health Needs of Persons With Autoimmune Diseases During the Coronavirus Disease 2019 Pandemic: A Proposed Framework for Future Research and Clinical Care Kathleen S. Bingham MD, PhD Nathalie Rozenbojm APN, BScN, MScN Mariah Chong‐East Zahi Touma MD, PhD First published: 13 December 2020 https://doi.org/10.1002/acr2.11205

Relevant to PSCers and IBDers? Let us know what you think. One reviewer said:
review of psychosocial distress for people with autoimmune diagnosis during COVID19 is on point:
  • feelings of discrimination
  • fear of infection & uncertainty re immunosuppressive meds
  • less access to care
  • prior health‐related trauma
  • effect of social isolation
Understandably, donations have slowed during the pandemic while everyone deals with individual challenges. PSC Partners Canada's efforts to find a cure however have not slowed. If you are in a position to contribute, we ask for your ongoing support so that we may continue serving the PSC community. 

PSC Partners Seeking a Cure Canada 2020 Accomplishments:

  • Advocacy: Joined with PSC Partners in jointly conducting the successful Making Our Voices Heard: Patient-Focused Drug Development Forum (PFDD). Available on-demand.

  • Education: Joined with PSC Partners in conducting seven informative webinars, in lieu of the 2020 Conference, to ensure that our community stays informed and educated about PSC research, treatments, and more. Available on-demand.

  • Research: Announced the Canadian funding of three new, promising, international research projects, complementing the research portfolio of seven new PSC Partners (US) research projects. Read more about Canadian funded grants here.

  • Thinking Big: 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 and two members of the Canadian Board have joined this cohort.

  • Investing in Canadian Capacity: Established a two-year PSC Partners Canada Fellowship in PSC and Autoimmune Liver Disease at Toronto General Hospital with joint support from the UHN Foundation. Also funded the inaugural Canadian Association for the Study of Liver Disease PSC Partners Seeking a Cure Canada Award at the Feb 2020 Canadian Liver Meeting for the best abstract presented on PSC.

Most of our financial support comes from Canadians connected to a person living with PSC. If you are considering asking any of your community to support PSC Partners in their year-end giving, the fabulous Loon Duct volunteer Meg R. has created beautiful animated GIFs that you can share (featuring Luna the loon in festive attire). They combine holiday greetings with a brief description of our accomplishments in 2020 and the PSC Partners Canada mission. It is our hope that these GIFs can be used to both provide information about PSC Partners Canada and bring a smile to the recipient.

Also, we've made giving easier this year! As always, you can mail us a cheque, or give online at chimp.net, and now, you can simply send an Interac e-transfer to contactus@pscpartners.ca! Details and links on how to give here.

Together, we will find effective treatments a cure for PSC.
Enjoy these seasonal greetings!
To download:
  • On Windows: Right-click on image to download, select save image as and save as a .gif file
  • On a Mac: Hover pointer above image, download arrow appears, click on arrow and save as a .gif file.
Upon email request to contactus@pscpartners.ca, we can email the file(s) to you as attachment(s).

This is an urgent request to:

1) Contact Registry Director at rachel@pscpartners.org

2) Complete the PSC Partners COVID-19 survey here launched in April 2020 upon seeing that there was no tool to capture COVID-19 in PSC patients.

3) If you haven't joined the PSC Partners Registry, do join! Your de-identified data is crucial for research. www.pscpartnersregistry.org

If you are a registry participant and have had COVID-19, please update your surveys. The Clinical Survey has a short section on COVID-19.

We're together in the fight, whatever it takes!
the Registry Team
January Zoom Room

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.

PSC Awareness!
COVID-19 Safety!
Look great!
Get your PSC Partners mask (triple layer, adjustable ear elastics, metal nose piece) for a suggested donation of $10.
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