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►December Challenge Grant a Success!! ►The Board is Growing! ►Stories from the PSC Community ►Events ►PSC Research Profile ►Rare as One Grant ►New
PSC Partners Initiative: WIND ►2022 Annual Conference ►Loon Poll
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December Grant Challenge
was a Success!
Thank you to all of the individual donors and the Ciaves Gomel & Poletto families for the $15,000 matched grant!
Your generosity supports our mission to drive research to identify treatments and a cure for Primary Sclerosing Cholangitis, while providing education and support for those impacted by this rare disease.
Together, $30,000 was raised, and together, we will find effective treatments and a cure for PSC!
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Interested in donating to PSC Partners Canada?
You can:
• mail us a cheque
All details and links on how to give here.
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The Canadian Board of Directors is Growing! |
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Welcome new members to the PSC Partners Canada Board of Directors!
Two longtime volunteers and members of the PSC Partners Canada community have joined the Board of Directors.
Please join us in welcoming Sandy VanOstrand and Richard Ayuen, both past recipients of the PSC Partners Canada Community Dedication Award, and both currently living in British Columbia. We thank Sandy and Richard for volunteering their time and talents to serve the Canadian PSC community as Board members!
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Loon Duct readers met Sandy in the Sept 2020, Volume 2, Issue 1 of the Loon Duct. You can find that article about Sandy here. Since then, Sandy has been heading up the Fundraising Committee and last spring successfully led PSC Partners Canada through our first online fundraising auction.
This issue introduces Loon Duct readers to Richard below in "Stories from the PSC Community".
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Stories from the PSC Community
Reflections on Being a Caregiver of a PSC Patient - Richard Ayuen
Author: Kristian Stephens
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Richard Ayuen is one of PSC Partners Canada’s newest Board of Directors members as of February 2022. Kristian recently caught up with Richard to learn more about why he joined the Board and about his journey as being a caregiver for his son Matthew.
Why did you join the Board?
As a father to someone with PSC and seeing how this terrible disease has impacted so many in our PSC community, I want to do everything possible to help in the fight to find a cure or treatment. There are only so many hours in the day and with so much to do, I have joined the Canadian team in the hope I will add some additional horsepower and support while bringing a different perspective to this amazing team. My passion in life is helping others. I bring to the Board 25+ years of business experience and over a decade of first-hand care giver experience from supporting our son Matthew.
How did you become a caregiver?
I first noticed Matthew’s jaundice while working out with him at the gym back in January of 2009. Panic set in and after ten months of testing we learned that he was diagnosed with PSC. Getting the diagnosis was bittersweet as on one hand it was good to know what the cause of Matt’s disease was, but on the other hand it was scary to learn it was PSC.
The PSC became very aggressive and within six months of his diagnosis, on May 12, 2010, he was given six months to live, unless he would be lucky enough to get a new liver from live donor. Hearing those words is a moment in time that will be there my family and I for eternity. Within a short time nine people came forward to be tested as a potential donor for Matthew, such a humbling experience. On September 7, 2010, Matthew got 71% of my liver, it was a no brainer decision and like my wife, 16 years earlier, I had the chance to give life to our son.
Within days of the transplant, his body started to reject the new organ and set us on a path to what turned out to be a year- long recovery. Albeit short, Matt enjoyed living a normal teenager’s life until January 2012 when the disease became aggressive again. Over the next 18 months, Matt’s health declined quickly and he was put back on the transplant waiting list. Fortunately, Matthew had his second transplant in October of 2013. Today he is chasing his dreams as he is doing well.
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Richard (above) & Matt (below).
December 31, 2021
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What helped you and your family to cope?
From the very start of this journey, we experienced some of the darkest moments that one can ever imagine. There is no doubt that without family, friends and the support and caring from the PSC community this journey would have been much more difficult. But I would also say you cannot sit around feeling sorry for yourself and you need to take ownership and do whatever it takes. We as a family and I learned everything we could about PSC and received help from counselors and others in the PSC community that had taken this journey before.
Can you please tell us of your polar plunge that both you and Matt have done?
Matt and I celebrated 10 years from his first transplant and to raise awareness about the importance of organ donation by taking a plunge into the cold waters of the Pacific Ocean at White Rock, B.C. on December 31st 2020. This past year, despite being thousands of miles apart, on December 31st, 2021 we both took the plunge into the Pacific Ocean at the same time. I was in B.C. while Matt was in Costa Rica. Needless to say, the water was a little colder for me in B.C.
What would you tell others who are caregivers of someone with PSC?
This journey with PSC is like no other as it is a marathon with episodes of chaos, helplessness, and happiness. Make sure you:
- Get educated about PSC by seeking medical expertise
- Keep the family positive in both body and mind
- Take time and look after yourself
- Just be there
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Welcome to the Board Richard, and thanks for sharing your family’s journey!
For more information on other tips and resources for caregivers, you may find them at here.
In addition, on April 5, 2022 at 6 p.m. MT (8 p.m. ET), PSC Partners will be hosting a Zoom Room for caregivers, spouses, and parents. To register for this free event, please go to here.
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Upcoming PSC Related Events!
Socials, Peer Group Zoom Rooms, and the 2022 Conference! See below!
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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 this supportive, helpful, fun virtual event. Space is limited. Registration required. Link to register below. The sessions are not recorded, and is intended as a safe open forum.
All at 6:00pm-7:00pm MT (8pm EST)
Unless otherwise indicated, events are listed in Mountain Time
Tuesday, April 5, 2022
Caregivers/Spouses/Parents
Wednesday, April 6, 2022
For Those Coping with Loss and Carrying on the Spirit
Wednesday, May 11, 2022
Adult PSC Patients 18 & Over
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Join the conversation, and welcome to the
best family we wish you didn't need!
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PSC Research Profile
Sonya MacParland, Ph.D.
Author: Virve Aljas-Switzer
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This article is part of a series of profiles on Canadian researchers whose work relates to PSC. The more researchers I meet, the more I see how fortunate we are as patients to be part of such a collaborative and optimistic scientific community. |
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In this case I spoke with Sonya MacParland, Ph.D. She is a Scientist in the Ajmera Transplant Centre at the University Health Network (UHN), Immunologist, and an Associate Professor at the University of Toronto (U of T) in the Department of Laboratory Medicine and Pathobiology.
She has been studying the liver since she was a graduate student when she looked at the way it is impacted by viruses. Later at U of T, she met people involved in the transplant program and became interested in the fundamental biology of the liver.
Even as recently as 2016 when she was doing this work, there wasn’t a clear understanding of all the cells that make up the liver. Dr. MacParland explained that it can be difficult to identify cells within a specific piece of tissue from an organ. In the liver’s case, it is largely made up of hepatocytes. “The cellular signature of hepatocytes can drown out the other types of cells, even though they’re important.”
Mapping the Liver
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Recently technology has enabled scientists to look at pieces of tissue at a single-cell level, making it possible to “pull out the noisy cells and look at the quieter, more rare cells to understand what is normal in a healthy organ.” This single cell work is being performed by Dr. MacParland and her team at UHN in collaboration with Dr. Ian McGilvray, a transplant surgeon in the Ajmera Transplant Centre at UHN and Dr. Gary Bader, a professor and computational biologist at the U of T. |
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Dr. MacParland presenting to attendees at the Fall 2019 Toronto PSC Meetup. Watch this presentation here.
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Dr. MacParland is one of the authors of a paper called, Single-Cell, Single-Nucleus, and Spatial RNA Sequencing of the Human Liver Identifies Cholangiocyte and Mesenchymal Heterogeneity. It’s a mouthful, but essentially it is about “refining our understanding of the map of the liver. It is about making sure that we have the best healthy maps, with whatever technology best supports it, in order to then provide a gold standard for our disease map.” You can learn more about this study here, and about how in 2019 PSC Partners Canada helped fund this research here.
A natural next step is to use this map as a platform to better understand disease.
Their team was given an opportunity to apply for a grant focusing on autoimmune liver disease through the Canadian Institutes of Health Research (CIHR). They spoke to clinicians who work on autoimmune disease, who unanimously said that PSC is very poorly understood, and how much they would benefit from a clearer understanding of the cellular makeup.
Sharing Data: A Two-way Street
At the Canadian Liver Meeting, Dr. MacParland met Mary Vyas and Rachel Gomel, of PSC Partners Canada. They formed a team along with fellow Toronto-based researchers Drs. Aliya Gulamhusein and Gideon Hirschfield. Dr. MacParland emphasized that it is extremely helpful to have people in the room who have lived experience.
Something she noted about this research and patient community, is that information is shared as it happens. We have unique insights into the steps that go into research in early phases, as opposed to waiting for a polished version to be released. “Here’s what we’re doing, here’s what we’re thinking.”
One of the principles they are committed to is openly sharing data. In the case of their paper about liver mapping, they released it as a “bio archive” which means it could be shared without entering into a lengthy peer review process. This way everyone can see the work, and apply it to their research. They also share the data that made up that work in advance.
Through several channels, including PSC Partners Canada, they have connected with other researchers, “which makes for a richer path forward as opposed to studying in silos.”
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Loon Duct writer Jessica Travis, Dr. MacParland, and PSC Partners Canada President Mary Pressley Vyas, Fall 2019 Toronto PSC Meetup |
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I asked Dr. MacParland if she felt that the attitudes towards collaboration and open data sharing in science have changed in recent years. In her words, “Absolutely.” Success in science used to be measured by the impact of individuals, whereas now it is shifting to the impact that can be created by multiple teams or labs working collaboratively. Particularly with rare disease research, there is a huge benefit to pooled resources and brainpower. |
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A Positive Outlook for PSC Research
There are tools in place now for research in several rare diseases, including PSC to move forward faster. When we understand the “cellular players” in both early and late stage disease, it gives scientists clearer targets to focus on.
Liver research in general is moving quickly forward, because scientists are able to look specifically at the site of disease. The role of patients in this work is hugely important, and everyone working as a team can move the field forward.
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Dr. MacParland, PSC Partners Canada president Mary Pressley Vyas, and PSC Partners Canada Board member Rachel Gomel, 2020 Canadian Liver Meeting |
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Watch for more PSC Research Profiles
in upcoming issues of the Loon Duct!
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FANTASTIC NEWS!
It’s Much More Than a Grant!
PSC Partners Receives CZI Rare As One Grant for a Third Year!
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In February, PSC Partners was awarded a third year of support from the Chan Zuckerberg Initiative (CZI). This includes an additional $150,000 financial support, capacity-building resources, and the invaluable participation in the Rare as One Network!
Why is this big news for PSC Partners Canada? We may be a financially independent entity that controls all its funding decisions, but PSC Partners Canada and PSC Partners, with multiplied energy, work seamlessly together, fully aligned in their mission to eradicate PSC. A gift of the pandemic, PSC Partners Canada and PSC Partners now share a virtual “office,” join the same virtual Rare as one training sessions, and strive for the same goals. Canadian affiliate work has become increasingly integrated with PSC Partners’.
The extension of the Rare As One U.S. $450,000 two-year grant means that capacity can be further expanded as we launch an international collaborative research network (ICR Network). It also means that collaborations we have built with the cohort of Rare As One grantees can continue and become even more constructive. For a full list of the Rare As One grantees visit here.
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Not pictured above, Ricky Safer, CEO PSC Partners and Rare As One Coummunity Member
To keep abreast of PSC Partners Canada and PSC Partners developments, participate in and/or listen to past ROADMAP recordings and get the full context of the PSC Partners ICR Network initiative. Please follow our communications leading to the first official meeting of the PSC Partners ICR Network which will be held during the 2022 PSC Partners Conference June 2-5. Your role is crucial in accelerating vital research and amplifying the important PSC patient voice in research.
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Announcing a New
PSC Partners Initiative!
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Worldwide Integration of
Natural History Databases
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What is WIND?
WIND, Worldwide Integration of Natural History Databases, is a PSC Partners-led and sponsored initiative that will make valuable patient data available to researchers. This will give them a better understanding of the lived PSC experience.
The WIND database will serve as a central location where PSC natural history data is securely shared with PSC Partners and with the broader PSC research community. Medical centers from around the world will be invited to contribute clinician-reported natural history data.
Data will be integrated from existing databases in different countries, amplifying their power by facilitating consistent, comprehensive, and monitored data collection. This will ultimately support and accelerate drug development for PSC.
Why is the natural history of a disease important?
Natural history refers to the usual course of a disease over time. When natural history is captured, patients are followed over time as their PSC progresses. With a patient’s consent, important data, such as treatments, complications, and more, can be stored securely in a natural history registry.
Natural history studies are crucial to PSC research, and will one day enable us to get the right treatment to the right PSC patients at the right time.
How is WIND different from a patient registry?
The main differences between a natural history registry (or database) and a patient registry are the types of data, and how the data is captured. The PSC Partners Patient Registry is a patient-reported registry. A natural history registry includes systematic and regular collection of past or current data from medical records, imaging data, hospitalization records, and lab test results. The systematic capture of these health data over time is key to enabling the completion of natural history studies.
What are some of the main objectives of WIND?
WIND aims to contribute to development of biomarkers which may be used to demonstrate effectiveness of an investigational drug for PSC. A biomarker is a characteristic of the body that can be measured. For example, blood tests or liver imaging may serve as biomarkers of treatment response. One reason clinical trials for PSC are challenging is because PSC currently lacks noninvasive biomarkers that are proven to correlate with disease progression.
In rare disease drug development, natural history data may provide an untreated external control group (instead of a group receiving a placebo) for late-stage clinical trials. The natural history data must meet stringent regulatory collection and monitoring requirements, as well as patient confidentiality and data security; WIND is being designed with this use of the data as an objective.
The WIND initiative also plans to collect various measures of quality-of-life simultaneously with physician-reported clinical data. This will support the study over time of PSC symptoms and quality-of-life during PSC progression.
Who is involved in WIND? How can I join?
WIND is the inaugural project of the PSC Partners International Collaborative Research Network (ICRNetwork). The ICRNetwork is a place for anyone to volunteer and contribute to ongoing research efforts. The success of WIND relies on support from patients, caregivers, clinicians, and researchers.
To support drug development, PSC Partners is working with great urgency to establish formal partnerships with academic researchers and institutions, and we will keep PSC Partners Registry participants and the community updated on which sites are ready to enroll patients into the WIND cohort.
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It is important to know that the goals of WIND can be accomplished by enrolling a few thousand dedicated PSC patients who are willing and able to follow-up regularly at dedicated research centers. Given the limited budget and numbers of patients and research centers needed to accomplish these goals, not all interested PSC patients will be able to join this initial cohort. An additional challenge is that many in our community do not live near participating research centers.
We value every PSC patient's voice. Regardless of whether you are able to join the WIND cohort, we encourage you to join the PSC Partners Patient Registry, through which you can give priceless input and can support the WIND initiative and other PSC research studies. Through the Registry, PSC Partners may connect you to ongoing natural history registries, research studies, and clinical trials for PSC.
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We value every PSC patient's voice. Regardless of whether you are able to join the WIND cohort, we encourage you to join the PSC Partners Patient Registry, through which you can give priceless input and can support the WIND initiative and other PSC research studies. Through the Registry, PSC Partners may connect you to ongoing natural history registries, research studies, and clinical trials for PSC.
Watch this short patient-friendly video from the FDA defines and describes biomarkers:
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LEARN MORE!
Together in the fight, whatever it takes!
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Mark your Calendar!
June 2 - 5, 2022
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Calling all patients, caregivers, researchers and clinicians!
The PSC Partners Annual Conference will meet virtually this year, June 2-5, 2022, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital.
We are excited to see you in attendance as we bring our community together for important conversations, exciting research updates, and renewed connection via our interactive, virtual platform.
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What can you expect from the virtual PSC Partners Conference?
Plans are in the works! You can expect:
- Selective and engaging presentations on PSC and current research presented by international experts on PSC and PSC-related diseases, co-hosted with Brigham and Women’s and Mass General Hospital (Harvard University)
- Opportunities to ask questions and have conversations with experts in small "Meet the Professor" breakout sessions
- Numerous chances to reconnect virtually with friends from the PSC community during fun social events, engaging peer-to-peer sessions, small group chats, and more
- Launch of the ICRNetwork! And Think Tank meetings for the PSC Partners Strategic Research Plan and WIND, with patient input front and centre!
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Do you want to meetup in person?
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PSC Partners Canada would love to coordinate some regional opportunities to meet in person around the time of the annual patient conference (June 2 - June 5, 2022).
So, we have a Loon Poll for you to anonymously share your preferences!
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Would you consider attending an in-person meetup?
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Yes- if attendees provide Proof of Vaccination & there's Rapid Testing onsite
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Would you consider attending an in-person meetup in...
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Toronto area (inside, with proof of vaccination, onsite rapid testing)
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Vancouver area (inside, with proof of vaccination, onsite rapid testing)
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Watch the PSC Partners website, newsletter, and social media for conference updates. Go here.
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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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