Volume 1, Issue 4
June 2020
Dear PSC Community,

This is a difficult time. Together, we are witnessing the worst and the best in humanity, and no matter where we are, we are hurting.

PSC Partners Canada stands in solidarity with all who are fighting systemic racism, and in particular, anti-black violence. We recognize that systemic inequity is a barrier in all aspects of life, and so importantly to our mission, to accessing healthcare. As an organization with a mission to support those affected by PSC, we are using this moment to look closely at ourselves and to find ways of ensuring that we are actively reaching, engaging, and supporting all members of the PSC community.

We believe that black lives matter.

PSC Partners Canada Board of Directors:
Mary Vyas, Rachel Gomel, Eve Jedzrejewska
Communications Co-Chairs: Meg Ramore, Jessica Travis

► Canada Research Funding ► You're Not Alone Zone ► Who is Eve Jedrzejewska? ► Free Webinars We Recommend ► Patient-Reported Covid-19 & PSC Survey ► PFDD Meeting ► ZoomRooms-Peer Group Online Meet-Ups ► Tips for Hosting Safe Zoom Meetings ► PSC Patient Registry ► Canadian COVID-19 Resources ► 2021 Annual Conference
As you can see, Mary is ready with her megaphone to share some very good news!

PSC Partners and PSC Partners Canada received a large number of exceptionally promising research proposals for the 2020 round of funding. The two organizations together funded a record-high 10 research grants! You can find information on all of the grants here.
PSC Partners Canada funded three grants this round. This is double the number of previous awards for PSC Partners Canada . Together, through all of our donations and fundraising, we are making a real difference in supporting research to better understand PSC.

Please meet the researchers and their projects:

► Evaggelia Liaskou, PhD, University of Birmingham
► Exploring the metabolic profile of T cells in patients with PSC

► Alan C. Mullen MD, PhD and Daniel S. Pratt, MD, Harvard Medical School
► Creation of liver organoids from pluripotent stem cells derived from donors
► with primary sclerosing cholangitis

► Joel Pekow, MD, University of Chicago
► Mucosal markers to predict the onset of colonic neoplasia in inflammatory
► bowel disease patients with primary sclerosing cholangitis

For more details on these research projects go here .
YOU’RE NOT ALONE ZONE (#YNAZone)
Watch for the “You’re Not Alone Zone” posts on social media and come have some fun with the PSC Community!

Each post gives you an opportunity to share something with your PSC pals, whether it be a photo of your favourite pet, some ideas for a game night with family and friends, or some laughs with some of your PSC peers in a zoom meeting.

It’s a great way to meet some new people or just let others get to know you a little better.  We may be separated, but we’re not alone!

Find the "You're Not Alone Zone" on Facebook , Twitter and Instagram


Who is Eve Jedrzejewska?
Eve Jedrzejewska has been a part of PSC Partners Seeking a Cure for the past 12 years. She is co-founder, Treasurer, and member of the Board of Directors, PSC Partners Seeking a Cure Canada.

I have been involved with PSC Partners Seeking A Cure since 2008, the year my daughter Sara was diagnosed with PSC at the age of 4. Shortly after her diagnosis and a quick internet search, I found PSC Partners Seeking A Cure and headed to Jacksonville, Florida for my first conference at the Mayo clinic. I have been to every conference since then! And recently Sara has been attending with me as well. In PSC Partners we have found friends, mentors, support, education and so much more.

The idea for PSC Partners Canada chapter came to me at that very first conference in Jacksonville, but didn’t come to fruition until I met Mary in 2013 With the power of two in Toronto we had momentum to get moving, and with support from Rachel in Montreal, Ricky and others in the US, PSC Partners Seeking A Cure Canada was born in 2015.

It has been an exciting journey and one full of hope for a cure - I am excited about what we have been able to accomplish in Canada over a short period of time and what we can do together going forward.

-Eve Jedrzejewska
Free Webinars
We Recommend!
► PSC Partners Seeking a Cure

WEBINAR PSC/IBD and COVID-19: What You Want to Know
March 19, 2020: A discussion with 3 expert medical presenters who will each speak from their personal perspective about COVID-19 and how it relates to PSC and IBD. They will discuss what we know and don’t know about the COVID-19, misconceptions about the virus, reliable resources to access accurate information, why a new vaccine takes so long to go to market, and other issues facing our community. Watch the recording here.
WEBINAR Coping with PSC for Patients & Caregivers and Epidemic Psychology
PSC Partners Seeking a Cure 2020 Conference Webinar Series
April 29, 2020: This interactive session featured Dr. Jerome Schofferman, a retired physician and post-transplant PSC patient, and Dr. Sally Holland, a psychotherapist and PSC caregiver. In this webinar they discussed the everyday stresses of living with PSC, the challenges and rewards of being a caregiver, and the epidemic psychology and its interaction with the stressors of living with a chronic liver disease. Watch the recording here .

WEBINAR Update on COVID-19 for the PSC Patient
PSC Partners Seeking a Cure 2020 Conference Webinar Series
JUNE 3, 2020: Speakers Gideon Hirschfield,MD Cynthia Levy, MD and Stephen Rossi, PharmD, updated us on what we should know about the current situation with COVID-19 and answered our questions. Recording coming soon - find the link here.

PSC Partners 2020 Conference Webinar Series will be ongoing throughout the summer, so keep an eye out on social media Facebook , Instagram and check the PSC Partners Seeking a Cure website often for the latest updates.   
► Crohn’s and Colitis Canada

WEBINAR COVID-19: Updates and FAQs
May 14, 2020 : Get the latest recommendations for people living with IBD. Learn about cases of COVID-19 in patients with IBD, your level of risk and what you should do as schools and the economy start reopening across Canada. Experts provide answers to commonly asked questions. Check out this webinar here .

For more webinars from Crohn’s and Colitis Canada, please visit their website here .
► Autoimmune Hepatitis Association

WEBINAR SERIES Autoimmune Liver Disease and the COVID-19 Pandemic: Frontline Report: free bi-weekly webinar series is hosted by the Autoimmune Hepatitis Association in partnership with the Center for Autoimmune Liver Disease at Cincinnati Children's Hospital (CALD).

Go to AIHA's website here for a full list of these webinars.
► American Association for the Study of Liver Disease (AASLD)

AASLD webpage is updated regularly with information on the liver and COVID-19.

WEBINAR SERIES : “COVID-19 and the Liver” Check out the series here.

WEBINAR : "COVID-19 and the Liver: Telemedicine during the COVID-19 Pandemic and Beyond"  Check out this webinar  here.

Clinicians are the intended audience for these AASLD webinars. However, anyone is welcome to participate.
PSC patients worldwide are invited to join us in sharing the survey. Aggregated information will be shared publicly in a de-identified format.

To take the survey, please click here .
October PFDD Meeting
SAVE THE DATE! NOW VIRTUAL
Please plan to virtually attend the
Patient-Focused Drug Development (PFDD) meeting with the FDA

Date: Friday, October 23, 2020
Place: Virtual Online Meeting

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 FDA recognizes that, "Patients are experts in what it is like to live with their disease or condition and use of available treatments." This is 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 is the PFDD meeting important for PSC patients, families, and the FDA?
PFDD meetings give the FDA and other key stakeholders, an important opportunity to hear directly from patients and their caregivers about:
  • the symptoms that matter most to them,
  • the impact the disease has on patients' daily lives,
  • the patients' experiences with currently available treatments,
  • and what they hope for from future treatments.

Who will attend the PFDD meeting?
The FDA, drug developers, clinicians, and other researchers will be there to hear what the PSC community has to say. We want the FDA to experience the commitment of our patient community in order to understand the urgent need for treatments and an eventual cure for PSC. Attendance numbers matter! We invite and encourage PSCers from around the world to attend the meeting virtually!

In what ways can you participate?
Attendance numbers matter! We invite and encourage PSCers from around the world to attend the webcast!
  • We need PSCers to complete the soon-to-be released PFDD PSC survey. Watch social media and your inbox for more information.
  • Attendees can submit comments online to the FDA during the open comment period of the event.
  • Even if you don't want to speak, being a part of the virtual audience is important to show the strength of our community.
  • We hope all attendees will participate in audience polling during the event.

Stay tuned for information on how to register. For more information, email PSC Partners Medical Science Liaison Joanne Hatchett joanne@pscpartners.org.

'ZoomRooms' Peer Group Online Meet-Ups
 On May 7th PSC Partners had their first Teen ZoomRoom Peer Group online meet-up. PSCers ages 13 to 20 had a chance to join in a virtual meetup! There were about 9 participants and 2 mediators who took turns discussing various topics, such as their PSC symptoms and starting college to where they would most like to go on a vacation. Attendees included some new faces along with some conference veterans, and everyone enjoyed having the time to connect. 

Because their recent Teen ZoomRoom was such a success, more ZoomRooms are coming!

► 2nd ZoomRoom for parents / guardians of PSCers under 21-years-old
June 11, 2020 • Click here to register.

► ZoomRoom for adult PSCers 40 & older
June 27, 2020 • Click here to register.

PSC ZoomRooms are a chance to connect with your peer groups and ask questions. These are meant to replace the peer groups at conference. Join and laugh, cry, and connect with old and new friends. ZoomRooms are open to the intended audience only to allow for open communication and relationship building. Advance registration is required.
Tips For Hosting Your Own Zoom Meetings
Tips to Protect Your Privacy in Zoom Meetings

  1. Avoid using your Personal Meeting ID (PMI) to host meetings. It’s best to use a randomly-generated meeting ID for each conference call. 
  2. Enable the “Waiting Room” feature.
  3. Require a password to join.
  4. Allow only signed-in users to join.
  5. Disable unnecessary guest privileges.
  6. Lock the meeting once everyone has joined.

For the full article click here.

Source: Kindra Cooper at Springboard.com
The Zoom website has lots of good information and resources to support you while connecting online. Check out this best practice guide:

Registry Upgrade Coming Soon!

The new registry will have a new look and feel, be mobile-friendly, be easier to navigate in languages other than English, and have periodic surveys.

If you are newly diagnosed, or have not yet joined the patient registry, please join. The registry is a powerful way to have your patient experience heard by researchers and is a good way to learn if you might be eligible for a clinical trial. PSCPartnersRegistry.org  

If you have already joined, thank you! 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
COVID-19 & Liver Transplantation in Canada?
Canadian Blood Services has published a transplant impact tool " intended to help the community better understand, in near real time, the impact the COVID-19 crisis has had, either directly or indirectly on organ donation and transplantation practices in Canada and by extension, what impact these changes have had on potential donors and transplant candidates."


No doubt the COVID-19 situation has drastically impacted Canada’s health care services over the past few months. From limiting visitors to cancelling elective procedures and appointments, and with shortages of some supplies, the effects of COVID-19 have been far reaching in hospitals. But how has COVID-19 impacted liver transplant centres across Canada? For the next Loon Duct issue, an update on this will be provided on this important topic.
PSC Partners Annual Conference
We're Planning for 2021.
PSC Partners Annual Conference in Boston Massachusetts JUNE 11-13, 2021!

Please start making your plans to attend the next PSC Partners Conference. We are excited to collaborate with Dr. Josh Korzenik, Brigham and Women’s Hospital, and Dr. Dan Pratt, Massachusetts General Hospital, for this event. The conference hotel is the Boston Marriott Burlington, Burlington, MA, just 19 miles from Boston’s Logan Airport.

FOLLOW US ONLINE!
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
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure

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