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►Summer Fundraiser: WALK83.01 ►June Conference Wrap-Up! ►Health Canada and Evusheld Approval for Covid-19 ►Stories from the Canadian PSC Community ►PSC Patient Spotlight ►Canadian Liver Meeting ►Rare As One Convening
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Last summer, we all worked together to make the online fundraising auction a great success. |
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Now we have another opportunity for you! |
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July 25 - September 30, 2022
Together we are creating a world where a PSC diagnosis comes with a cure!
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What? PSC Partners Canada is hoping to raise C$40,000 through WALK83.01 to fund one year of a PSC research study. We need your help! PSC currently has no effective treatment or cure but researchers around the world are working collaboratively and making progress!
Why 83.01? The distance of 83.01 was chosen to match the new primary sclerosing cholangitis disease code which is K83.01. Having a specific ICD10 (International Classification of Diseases) code for PSC will help us understand the epidemiology of PSC. K83.01 is in use in the US and other countries, and will be in use in the future in Canada.
When? July 25th - September 30th, 2022
How? 1) Donate: Canadian donors can donate directly to this event by clicking here. $83.01 is a suggested donation but every donation, big or small, helps us reach our goal.
OR
2) Take the WALK83.01 challenge and create your own giving group: Visit bit.ly/CanadaWALK8301 to learn how to create your own giving group with a customized web page to use to seek support and donations from your community. You can choose to
- Walk 83 km over time, or complete the event through other activities such as biking, or kayaking.
- Perform 83 random acts of kindness.
- Make 83 friendship bracelets with your children.
- Split the mileage between team members.
- Feel free to come up with your own creative way of getting involved in this fundraiser. Ask co-workers, friends and families to support you.
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Join Bili and join us! And let us know a little bit about your experience achieving your 83.01! Send us updates, photos, or videos that we can share on our Facebook or Instagram page.
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JUNE CONFERENCE WRAP-UP!
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Thank you to the close to 550 people who attended the 2022 Annual PSC Partners Conference! Of those, 58 were from Canada! Your time, effort, attention, and voices truly make a difference in the search for treatments and a cure for PSC.
If you missed part or all of the Conference, or simply want to revisit some of the important sessions, view the recordings here. We would mention the highlights except that each one of these sessions was so important and worth your time!
In addition to the formal presentations, the conference platform created many ways for us to connect and engage with each other. This included a Canada booth, Peer Group meetings, Gatheround “speed friending” socials, “Meet the Professor,” and our very special Canadian Meetup!
All five of the PSC Partners Canada Board of Directors attended and we had a chance to see old friends and meet new attendees from Canada. We even had several Canadian PSC researchers drop in and say hello! Despite being another zoom room - we all really enjoyed being together and brainstorming on ways to stay connected. Stay tuned!
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A screen shot from the Canadian Meetup. PSC Partners Canada takes patient privacy seriously! We do not have explicit authorization to use each of your images, therefore photos have been replaced with cartoons. Can you find yourself? |
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Don’t miss the post-conference webinars that will be airing through January. These webinars will contain many of the patient education talks and Q&As that are such a valuable part of our in-person conferences.
All webinars are 6:00 pm7:30 pm Mountain Time, registration is required, and information can be found on the events page at PSC Partners website.
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Wednesday, September 21, 2022
Wednesday, October 12, 2022
Thursday, November 10, 2022
Thursday, December 1, 2022
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July 11, 2022
May 26, 2022
May 2, 2022
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Health Canada authorizes Evusheld for the prevention of COVID-19 in immune compromised adults and children
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The drug is approved for use in adults and children (12 years of age and older, weighing at least 40 kg) who are not currently infected with COVID-19 and have not had recent known contact with someone infected with COVID-19, and:
- who are immune compromised and unlikely to mount an adequate immune response to COVID‐19 vaccination; or,
- for whom COVID-19 vaccination is not recommended.
Patients should talk to their healthcare provider to determine if Evusheld is appropriate for them. Evusheld is not currently authorized to treat COVID-19 infection, nor is it authorized to prevent infection in people who have been exposed to the virus.
For more information on this approval, please visit Health Canada here.
For a full list of Health Canada’s approved vaccines and drug treatments for COVID-19, please visit here.
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Stories from the Canadian PSC Community
Reflections on Being a PSC Patient, a Doctor, and a PSC Researcher - Brendan Byrne, M.D.
Author: Kristian Stephens
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Kristian recently caught up with Dr. Brendan Byrne from BC to learn more about his journey with PSC and about his research company.
Can you please tell us a bit about yourself? I’m 57 years old, a father of three and happily married to my lovely wife Noral for 25 years. I have been a lifelong runner and enjoy the outdoors here in BC. For the past 30 years, I have been a family doctor while having a parallel career as an innovator and entrepreneur. Through my lifestyle medicine clinic (which opened five years ago), my deep passion is to use the latest science to help people change their behaviours and optimize their health.
In 2020, I was diagnosed with PSC after experiencing some pain that I thought was from gallstones. I am fortunate that my disease is in the relatively early stages, despite likely being present for at least 15 years. My hope is that it is progressing very slowly. My heart goes out to those whose disease is rapidly progressive.
Can you please tell us a bit about your company? During my research, to make sense of my diagnosis, I turned to my network. A conversation with Dr. Pieter Cullis (a University of British Columbia professor) sparked the realization of the potential that the same technology used in the COVID vaccines could work in PSC.
Lipid Nanoparticles (LNP) technology can be used to target the cells affected by PSC and potentially turn up or turn down key proteins. The goal is to stop the fibrosis that develops in PSC. Pieter and I have co-founded a company along with Dr. Alnoor Ramji and Paul Drohan, daedalus BIOTECH (daedalus.bio).
Our mission is to bring a new therapeutic to market for PSC. One of our early observations was that many clinical trials in PSC fail because of the variability of disease stage. We realized that we need better tests to understand disease progression so that we can initiate treatment at the right time and know when it is working. Daedalus will be starting a study to try and develop better diagnostic and staging tests. We will soon be recruiting patients for this study.
What is this proposed Lipid Nanoparticles (LNP) technology about? The simplest way to understand LNP’s is to think of them as the envelope for the message that you are sending. They are very small and can be injected into your body through a simple intramuscular injection. One of the most exciting breakthroughs in medicine has been the use of the LNP delivery system to develop the successful COVID-19 vaccines. Here the LNP contains a genetic message (RNA) that the liver turns into a protein, that in turn prompts an immune response. The cutting edge of LNP science allows us to target specific cells and send genetic messages that increase or decrease the expression of specific proteins. For PSC, our company is working with research groups around the world to identify targets in PSC.
What would you tell others who are living with PSC? We only have today to enjoy. For all of us the future is uncertain (whether we have PSC or not). Being diagnosed with PSC has made this very real for me, and I am deeply appreciative of all that I have in my life. For others with PSC, it is important to recognize that we only control some of the cards we are dealt in life.
Through my background in lifestyle medicine, I do believe that eating well, exercising, getting enough sleep and managing stress is vital to staying healthy. These behaviours will not cure our PSC, but we will be healthier, longer.
Reflect on and cherish what you have. If anyone would like to reach out to me, my email is brendan@daedalus.bio
Thank you Dr. Byrne and we wish you the best of luck in your PSC research.
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Canadian Patient Profile
Spotlight: Mackenzie Hazlewood
by Virve Aljas
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I’ve heard some PSC patients say that when they learned of their PSC diagnosis, it changed the way they thought about their lives. Some describe it as re-evaluating what was important to them, and others mention that they were forced to consider aspects of life that they didn’t expect to deal with until they were older. For pediatric patients, this is especially true. |
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In this patient spotlight, I met with Mackenzie Hazlewood, who shared the unique perspective of someone who has navigated the transition from pediatric to adult PSCer. Mackenzie is based in Edmonton, Alberta. She is 19 years old and was diagnosed when she was 16.
Itching was the first sign that something was happening, but her symptoms were
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initially assumed to be an allergic reaction. Additional symptoms led to further testing, including a biopsy on the second day of grade 11. Mackenzie lightened her school workload to take time to cope with her PSC diagnosis. |
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Like many of us, she first did a deep dive searching the internet for information. She was frustrated to learn that she, as a 16-year-old girl, had a rare disease that most commonly affects men over 40. Sometimes fellow students assumed that the time she needed to take away from school to handle PSC symptoms was “a perk of being sick.” |
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In Mackenzie’s words, her doctor helped her “mellow out,” and to really understand the statistics online that can be alarming to read without more context.
Many PSCers cut out alcohol for several reasons. As a teenager or young adult, it can be particularly challenging to be surrounded by it at social events. We talked about different ways to navigate those situations like non-alcoholic drinks that are becoming more available, and how to politely decline as well. This is the kind of honest discussion that PSCers might not have with family or friends, and all the more it’s a reminder of why it can help to connect with other PSC patients who can relate.
Access to specialist care across Canada can vary widely, so I asked Mackenzie what her experience had been like in Edmonton. She said that as a pediatric patient, she was given priority and felt there was more of a sense of urgency to figure out the source of her symptoms. As she has transitioned to adult care, she finds there are longer wait times, as well as longer gaps between appointments.
One the most noticeable differences Mackenzie has noticed as she transitioned from pediatric to adult care, is that she has become more of an advocate for herself, rather than relying on her parents to speak for her. My advice for Mackenzie and any age patient is that if you have people in your life who can accompany you to appointments or help to be advocates on your behalf, invite them to be there. We can all use as much support as possible.
I wanted to quote much of what Mackenzie said, as she considers her words very thoughtfully. This was her advice to other patients under 18 who are facing a PSC diagnosis:
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Upcoming PSC Peer Group Zoom Rooms!
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PSC Partners’ ZoomRoom meetings are a great way for Peer-to-Peer Connections!
You're Not Alone Zone!
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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
Tuesday, August 23, 2022
Tuesday, September 13, 2022
For Those Living with Loss
Wednesday, September 28, 2022
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CANADIAN LIVER MEETING 2022
A hybrid Canadian Liver Meeting was held this past May in Ottawa. PSC Partners Canada is pleased to be a community partner for this event. We hosted a virtual exhibit booth, attended PSC-related presentations virtually, and sponsored the 2022 CASL PSC Partners Seeking a Cure Canada Award to recognize the best research on PSC presented at the meeting which was presented to Dr. Marwa Ismail.
Dr. Ismail's work was also presented, with additional data and analysis, at both the 2022 PSC Partners Annual Conference and EASL's International Liver Congress. You can find the abstract # OS078 North American evaluation of 2519 patients with primary sclerosing cholangitis: longitudinal patterns of disease activity identify and validate stable and progressive phenotypes here.
Thank you to CASL and to our donors for helping raise the profile of PSC, PSC research, and PSC Partners Canada within the Canadian professional hepatology association!
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PSC Partners Canada joins PSC Partners at the
CZI Rare As One Annual Convening
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PSC Partners is in the third year of participation in the CZI Rare As One grant. Pre-pandemic, the Rare As One grant had planned to include two annual in-person convenings to support the work of the 30 rare disease organizations in the grantee cohort. However, due to Covid, it was only until June of 2022, in the unexpected third year of this program, that the first Rare As One convening was held.
Understanding the importance of minimizing the risks of Covid-19 for this community of rare disease advocates, many of whom are rare disease patients, CZI planned a convening with features that allowed attendees to meet in person in relative safety: mandatory vaccination, testing, masking and outdoor dining for all meals.
Five of the PSC Partners CZI team, including two Board members from Canada, Rachel Gomel and Mary Vyas, attended this event to learn, share, be inspired by other rare disease leaders, and build upon the network that's been established through online work over the past two years.
The Rare As One program is based upon the idea that "patient communities are the agents and architects of their own change." CZI aims to "lift up rare disease communities, providing them with resources and tools to be more effective advocates for—and partners in—research." This grant is supporting PSC Partners and PSC Partners Canada in building capacity, strengthening community, and promoting collaboration. Learn more here.
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Ricky Safer, CEO of PSC Partners, speaking during general session |
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PSC Partners and PSC Partners Canada attendees with the ROADMAP poster |
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Representatives of the 50 cycle 1 and cycle 2 grantee organizations at the June San Diego Convening |
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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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