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► What's Happening?
► PSC Partners Annual Conference 2023
► Insights on Attending the Annual PSC Partners Conference
► Help Advance Canadian PSC Research!
► Mind-Body Wellness Study & Program Participation
► WALK83.01 Canada for PSC & BC WALK83.01
► Canadian Online Auction
► Canadian PSCers in the News
► Upcoming Events
| | What's Happening at PSC Partners Canada? | |
June is finding the PSC Partners Canada team busy! A few highlights of things we're doing and working on:
Representation:
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at the PSC Forum in Vienna on June 20. PSC Partners Canada participated in a panel discussion on Implementing Recent Treatment Guidelines for PSC Clinical Trial Enrollment
| | | Photo: PSC Forum in Vienna, June 20th. Patient representatives participating in a panel. From left: Martine Walmsley (from PSC Support), Sindee Weinbaum (from HETZ Israel, ELPA EU., Mary Vyas (PSC Partners Canada) | |
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at the EASL Liver Congress in Vienna, June 21-23. PSC Partners and PSC Partners Canada will be meeting with WIND-PSC advisors, PSC thought leaders and industry representatives.
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at a working group meeting of the biomarkers consortium of the Foundations for National Institutes of Health (FNIH). PSC Partners and PSC Partners Canada participated in a discussion of the need for biomarker development in PSC. The FNIH facilitates pre-competitive initiatives where there are serious unmet needs.
- PSCers WALKing, running, and raising awareness with the WALK83.01 Canada fundraiser, happening now! More details included below in this newsletter!
Planning:
- for the Canadian meetup at the 2023 annual conference. Details below.
- for the Canadian educational and peer support event to be held in Toronto, Ontario on Oct 14-15. This event is made possible by a grant from the Chan Zuckerberg Initiative, and will be held in partnership with Ajmera Transplant Centre and Toronto Centre for Liver Disease at UHN, U of T, and SickKids. Details are being worked out - for now, save the dates!
- for the launch of WIND-PSC, the joint project sponsored by PSC Partners and PSC Partners Canada to collect comprehensive data on a prospective cohort of PSC patients from multiple countries.
- for the September virtual auction, Hope for PSC 2023!
| | Registration Opening Soon! | | | |
Registration will open soon for the 19th Annual PSC Partners Patient and Caregiver Conference!
The best way to be notified directly when registration opens is to be subscribed to The Duct, PSC Partners' monthly newsletter. Sign up HERE if you aren't already receiving The Duct. And stay tuned on social media channels! | |
Canadians traditionally have a Friday post-dinner meet and greet to be sure we all get a chance to meet each other. We can't wait and hope to see many folks of the Canadian PSC community in person in September.
Updated masking policy: The health and safety of those who are immunocompromised in our community is of the utmost importance to us. To help people make a choice that is best for them, we are providing the following details.
While we will strongly recommend the wearing of masks at our Conference, masks will not be required. The Conference hotel does not require masks, and we cannot guarantee that masks will be worn by everyone.
To further protect immunocompromised people, all group meals will be held outside. Additionally, PSC Partners will provide sanitizing stations and free masks throughout the Conference venue. Depending on updates from the CDC, World Health Organization, or the state guidelines, PSC Partners protocol is subject to change.
Before attending, each person should evaluate the risks associated with traveling to and from the Conference and attending an in-person event. If you’re not feeling well, please consider not attending. We’ll miss you, but we want to keep everyone comfortable.
| | Some Insights on Attending the Annual PSC Partners Conference | |
The annual PSC Partners conference is coming up this September in Henderson, Nevada! This great informative event will involve three days of educational sessions presented by international PSC experts and will have peer-to-peer supportive gatherings, social engagements, and much more!
If you have not been before, and are not sure what to expect, Kristian recently caught up with Ken and Marilyn (Mee Mee) Wright who have attended past conferences. They shared some of their insights about attending the conferences
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How many PSC Partners conferences have you both attended?
The first PSC Partners conference Ken attended was in 2015 when it was held in Dallas, Texas. He was quickly greeted and offered friendly support by the conference attendees. This was both amazing and comforting to him. He did not feel as alone as he had been when he was diagnosed with PSC in 2009 as he quickly met others impacted by PSC. He thought the conference would be depressing which it was not. He has been to each in-person conference since then and the online ones too.
Mee Mee started attending the conferences in 2016. They had made the conference their family summer vacation as Mee Mee’s son also attended a few times.
Why do you both go to these conferences?
This conference is the number one resource for PSC patients, their families, and caregivers. The benefits are making community-friendly connections with the conference attendees. Ken stated that these events in the past have occured at a high-caliber facility near a hospital or PSC research center with first-rate Doctors. This is an excellent opportunity to learn from PSC specialists.
For Mee Mee it helped her to inform other members of Ken’s family about his diagnosis and gave her ideas on how to be a caregiver to Ken. Also, after attending the conferences, Mee Mee has been able to fundraise and raise awareness about PSC. This has made her feel more involved within the PSC community as she asks how can she help.
What are some tips for those who will attend the conference for the first time?
Ken recommends taking advantage of the mentor program by reaching out to PSC Partners when you register. Also, to attend the Thursday night dinner as it is a great way to meet new people.
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Help Advance Canadian PSC Research!
Summary by: Kristian Stephens
Several PSC clinical trials and research study opportunities are currently recruiting in Canada. They need PSC patients to advance this exciting PSC research. The following studies are currently recruiting in Canada (listed in no particular order). Please contact the study teams to determine if you may be eligible or if you have questions.
Please note that asking questions to a study team about the study in no way obligates you to join the study. It can, however, boost the message that PSC patients are willing to consider joining in clinical trials by learning about opportunities.
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1. International Quality of Life Study QRareLi
Improving the quality of life in patients with autoimmune liver diseases by structured peer-delivered support research study. Recruiting individuals living in Ontario.
The objectives of QRareLi study are to investigate the effectiveness of a peer-delivered psychosocial support intervention (Depping et al., 2021, JAMA Psychiatry) under routine care conditions in five countries (Germany, Canada, Belgium, Poland, and Hungary) and to prepare its implementation.
This study is currently seeking individuals with PSC, PBC or Autoimmune Hepatitis to serve as peer counselors and seeking research participants with PSC, PBC or Autoimmune Hepatitis in need of psychological support. The patient-reported outcome measures will be quality of life, depression, anxiety, illness-related cognitions, and social support. This study will run from June 2022 to May 2025.
Peer counselors will:
- Assist other affected individuals through weekly 30-minute telephone counseling sessions for 6 weeks over a period of one and a half years.
- Receive a two-day training, consultation guidelines, and supervision to prepare for the role.
- Complete 3 short questionnaires during your time in the study
- Be provided compensation for your time.
Research participants will:
- Receive a self-help manual and complete one chapter each week for 6 weeks
- Receive weekly telephone-based support from a peer counselor for 6 weeks and
- Complete 3 questionnaires (compensation will be provided)
If you are interested in enrolling or have questions to the Canadian study centre, please contact the study coordinator at q.rare@uhn.ca or at 1-416-340-3131 extn 6914.
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2. Escient PACIFIC study: Recruiting at study sites in Ontario (Toronto), Quebec (Montreal), and coming soon to Alberta
The PACIFIC research study is seeking adult participants with moderate to severe itch (pruritus) caused by cholestatic liver diseases like PBC or PSC. The study is evaluating an investigational, oral medication that targets and blocks the nerves that trigger cholestatic itch.
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3. Mirum VISTAS study: Recruiting at study sites in Ontario (Toronto, Ottawa)
Seeking adults with PSC to study if volixibat, an investigational medication, might be a safe and effective treatment option for PSC-related itch, and whether volixibat may improve markers associated with PSC progression.
The VISTAS Study is designed to give medical professionals the information they need to potentially help you and other PSC patients suffering from itch. Participants will receive standard medical care for PSC from an experienced medical team paid by the study sponsor, Mirum Pharmaceuticals. To make it easier on the patient, some of the study appointments will be home visits, and travel expenses to the trial site will be reimbursed.
At the end of the trial, there will be an open-label trial extension period of up to two years. All trial participants still meeting the trial criteria will have the opportunity to take volixibat during this extension period, regardless of their drug assignment during the double-blind period.
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4. Pliant INTEGRIS-PSC Phase 2a: Recruiting at sites in Alberta (Calgary, Edmonton), BC (Vancouver), Ontario (Hamilton, London, Ottawa, Toronto), Quebec (Montreal)
The INTEGRIS-PSC study is a A Phase 2a, multicenter, randomized, double-blind, dose-ranging, placebo-controlled, study to evaluate the safety, tolerability, and PK of PLN-74809 in participants with PSC and suspected liver fibrosis. Primary endpoint is to determine safety and tolerability following daily administration for up to 12 weeks. Additional secondary and exploratory measures can be found at ClinicalTrials.gov #NCT04480840.
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Mind-Body Wellness Study & Program Participation
New Research & Clinical Trial from the University of Alberta
Summary by: Matt Hodgson
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A research team lead by Dr. Puneeta Tandon out of the University of Alberta is focused on improving anxiety, depression, stress and fatigue in individuals with chronic conditions. Through a program entitled EMPOWER, participants are asked to engage in a series of evidence-based mind-body wellness interventions for 90-120 minutes per week.
In this program, participants get access to expert led physical movement, breathwork and meditation programming, plus weekly tips from doctors and other health care professionals about living with a chronic condition, and a psychology program about topics that help you to identify your values, learn about pacing and improve your sleep.
The primary outcome was changes in the Hospital Anxiety and Depression Scale (HADS). In the study, 44 patients were randomized to the control group and 43 to the intervention group. The between-group HADS total score improved by 20.0% and the HADS depression score improved by 25.8%.
Those in the Canadian PSC community may be able to participate as part of the current batch of programming as it includes chronic conditions of liver cirrhosis and those living post-transplant. You can learn more about the program and reach out to the research team by visiting https://empower-program.com/ or reaching out by email to empower@ualberta.ca.
Stay tuned for more updates about this helpful research and wellness initiative as PSC Partners Canada and the study team are exploring if such a trial could be useful to study such interventions in patients with PSC.
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Who is ready for a challenge? Please consider joining other community members on our mission to raise PSC awareness and funds by walking 83.01 miles (133.5 km) between June 1- August 31, 2023. Your involvement in this fundraiser will truly make a difference in our search for treatments and a cure for primary sclerosing cholangitis (PSC)!
Why did we choose 83.01 as a goal? Because the unique disease code for primary sclerosing cholangitis (PSC) is K83.01.
Our goal: This year’s Canada goal is $40,000, which will support one year research grants. Make a Canadian donation to help us reach our goal by clicking here.
How you can get involved: If you don’t want to walk, or are unable to, you can complete the event in a different way.
You may choose to stroll 8.3 blocks or paddle, pedal, rollerblade, swim or run. . . .
OR . . . make a direct donation!
Be creative and complete this unique fundraiser in a way that is fun and doable for you!
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BC Walk 83.01
Save the date! Sunday, August 13th at 11:00
We’d love it if you could make your way to Richmond, BC, for our first opportunity to meet and walk in person!
We will NOT be walking 83 K but we thought we might stroll along the dyke and then get a bit to eat and this could take 83.01 minutes. You can bring family and friends or come on your own.
Please contact Sandy if you think you might join us at sandra@pscpartners.ca. More details to follow.
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Canadian Online Auction: Hope is in our Hands
September 16 - 24th, 2023
We are looking for items to make our auction a success. Ask your local businesses and consider asking your friends and family if they have any connections that can help us secure auction items.
We are looking for items that can be easily delivered to the successful bidder. Some ideas include:
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Gift certificates: stores, restaurants, golf courses etc.
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Hospitality: cottages, hotel stays
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Experiences: theatre, concerts, amusement parks, wine tasting
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Services: massage, dog grooming, notary, manicures, seamstress
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Lessons: golf, tennis, painting, dog training etc.
Ideally we will also have many items that could be available to anyone in Canada. We will have a section for items in the Greater Toronto area and the Greater Vancouver area and hopefully Montreal.
We’re open to having other regions of the country represented if we can come up with enough local items and auction guests from that area. It really is up to you. We would like to have the dollar amount of auction items $50 or more.
Contact Sandy VanOstrand at sandra@pscpartners.ca if you can help!
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Canadian PSCers in the News
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In this section we’re highlighting news articles, small or large, that feature Canadian PSC patients.
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Cindy was first diagnosed with autoimmune hepatitis in 2005, then diagnosed with PSC eight years later. Cindy eventually needed a liver transplant and described the trying times as the search for donor got underway.
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Cindy Harris (middle), Dawnie McElligott (left), and Stephanie Lunn (right)
Photo Credit: Anna Ferensowicz
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“She also urged the public to reach out and educate themselves on organ donation and blood donation because, as she reflected herself, it's not something that becomes pivotal in one's life, until it's a decision that can save their own life or that of a loved one.”
This story highlights the work that goes into advocating for a donor and the generosity that get replicated through the process as although Cindy’s daughter couldn’t donate to her, she was a match for another patient in need.
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Be sure to check out the latest episode of the Living with PSC Podcast from PSC Partners as it features the amazing story of Canadian PSCer Jessica Travis.
In episode 38, host Niall McKay has an illuminating conversation with Canadians Jessica and Ian Travis about Jessica's journey with PSC, her search for a liver, and how her husband Ian became her live donor.
| | Photo Credit: Jessica Travis Facebook Page | |
Upcoming PSC Peer Group Zoom Rooms!
These meetings are a great way for Peer-to-Peer Connections!
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Join others folks from the PSC community for these supportive, helpful, fun virtual events. Space is limited. Registration required. Link to register below. The sessions are not recorded, and are intended as safe open forums.
All at 6:00pm-7:00pm MT (8pm EST)
Unless otherwise indicated, events are listed in Mountain Time
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Wednesday, June 21, 2023
Are you a PSC patient, caregiver, or family member who feels underrepresented in the PSC community based on your race, ethnicity, gender, or other factors? This virtual support group is just for you!
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Tuesday, June 27, 2023
Caregivers, Spouses and Parents of PSC Patients
Join this virtual peer-to-peer support group to chat with others who truly understand.
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Watch the PSC Partners website, newsletter, and social media for updates.
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FOLLOW PSC PARTNERS CANADA ONLINE!
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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.
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Our mission is 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.
PSC Partners Seeking a Cure Canada
A Canadian registered charity affiliated with
PSC Partners Seeking a Cure
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