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Dear PSC Partners Canada Community!
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Greetings from your Loonie Team!
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Conference WrapUP
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Quotes
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Who is Mary Vyas? PSC Patient Registry
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Crafted by Community Feature Article: Organ Donation in Canada
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The Loon Poll
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Reminders
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How to engage with PSC Canada
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Dear PSC Partners Canada Community!
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Welcome to the inaugural issue of the Canadian PSC Partners quarterly newsletter!
In June, at the PSC Partners annual conference, held this year in Rochester, MN, at the Mayo Clinic, a group of Canadian attendees gathered on Friday evening for a meet & greet. We had just completed a long intense day of PSC talks, breakout groups, and meals - it was late, and we were tired, a good tired, but tired nonetheless. After introductions, during which much hilarity ensued, the topic at hand turned to what we, together, could do to further the mission of PSC Partners in Canada - the mission to educate and support the PSC community, and to raise funds towards treatments and a cure.
It was suggested that we increase communication on our activities beyond Facebook, Twitter, and the occasional email. Two brave volunteers stepped forward to take this on. Please meet your Loon Duct team! Jessica Travis, a PSC patient, and Meg Ramore, a PSC family member.
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Greetings from your Loonie Team!
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Hello my fellow PSC enthusiasts, allow me to introduce myself, I am
Jessica Travis
, PSC patient and wife to the very well known Ian Travis, and mama to two fur babies. I have been part of the PSC Partners community for the past 5 years and each year I meet new and wonderful people affected by this disease, and each year I become more and more involved.
It is my hope that with this newsletter we will be able to bring our Canadian PSC Partners community content that is specifically relevant to Canadians. I am really excited to have our first newsletter out and look forward to the issues to come!
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Hi folks! My name is
Meg Ramore
(my pronouns are she/her). I live in North Bay, ON with my partner Chris and our pups Oliver Quartz and Pugsly Mae. My sister is a PSCer! I’m a newbie to the PSC family. I attended my first conference this year with my sister and mom and was blown away by all the lovely people (Canadians being double lovely)!
Like Jessica said, us Loonies are working to bring together content that speaks to the Canadian PSC context, while linking you to goings-on worldwide. We hope you engage with us on this new adventure and let us know what you would like to see in future newsletters!
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This year’s conference was held in Rochester, MN at the Mayo Clinic. This year there were 31 Canadian attendees, coming from four provinces. During Friday night's dinner, your Canadian Board of Directors, Mary Vyas, Eve Jedzrejewska, and Rachel Gomel, presented an update on our activities over the past year - punctuated by some enthusiastic “WE THE NORTH” celebrations, being just days after the Raptors clinched the title.
The recipient of the 2018 research grant from PSC Partners Canada, Dr. Aliya Gulamhusein of Toronto Centre for Liver Disease, was one of the general session speakers and she joined the good natured fun of enjoying this rare moment of Canadian NBA greatness. You can find a video of Dr. Gulamhusein’s talk, entitled "PSC Myth Busters”
here
.
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The Canadians came together on Friday evening and had a chance to get to know each other and brainstorm ways to support the Canadian PSC community.
We are kicking off a fundraising committee and a communications committee - pop us an email at
ContactUs@pscpartners.ca
if you are interested in volunteering!
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As is the custom, after dinner Saturday night, out came the costumes and the karaoke. Not surprisingly, the North represented well with the camping theme.
Among the prizewinners this year were Canadian attendees Ian and Jess Travis (bear and a campfire) and the Ramore family (s’more group costume).
Once the awards were presented and speeches were given, it was time to let loose! Between bustin’ a move on the dance floor, singing our hearts out at karaoke, and making memories in the photo booth there was more than enough entertainment!
Exhausted, we wrapped up Sunday with peer groups and said goodbye to new and old friends. Weather in Rochester presented some flight delays, but the conference was well worth the travel hassles and the exhaustion!
Have you heard?
The presentations from the conference are now online! Check it out
here
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All of the conference photos were taken by the talented
Kelly J. Shepherd
. Enjoy some more snaps below!
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What Canadian Conference-Goers
are Saying...
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"This was my first conference and I was not sure what to expect, but it really exceeded my expectations. It was well organized, full of terrific information from leading practitioners, and I was able to the first time since my diagnosis many years ago to speak to other PSCers." - JM, PSC Patient
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The PSC Partners conference was a great event to meet and connect with many others affected by PSC. Everyone was friendly. I look forward to attending future conferences." - Kristian, PSC Patient and Transplant Recipient
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“I love the empowering feeling that comes from listening to the progress being made in PSC research and the commitment and passion expressed by our leading hepatologists." - Rachel G., PSC Partners Canada Board Member, Registry Director
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“I go to the conferences to support my PSCer and it’s always good to see friends and family. It’s nice to know we are not alone” - Caregiver, 6th conference
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Who is Mary Vyas?
Authors: Jessica T. & Meg R.
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Some of you may know her as Mary, or as Bridget AC, or as the voice of the PSC Partners Seeking a Cure Canada facebook feed, and some may not know Mary at all. So who is Mary anyways? Well, let's just say she is a big reason why all of you are reading this article and why PSC Partners Seeking a Cure Canada exists.
In 2013 a member of Mary’s family was diagnosed with PSC. After doing some research on-line she discovered PSC Partners Seeking a Cure and saw that there was an annual PSC Partners patient conference coming up - but felt a bit apprehensive about joining what looked like a big happy family based on the conference photos from the previous year. She dipped her toe into the PSC Partners world by joining the PSC Partners Facebook support group instead, and found some much needed support from other PSCers. Of particular help, Mary was able to connect with other parents of teens with PSC. A year later, Mary and her husband, Jay, attended the conference which exceeded their expectations. She has been involved ever since, and, indeed, the conferences have become a big happy family reunion to Mary.
Canadian PSC community member Eve Jedrzejewska had a vision of bringing PSC Partners to Canada. In 2015, Mary joined Eve; together they founded PSC Partners Canada as a registered Canadian charity with a formal affiliation with PSC Partners. The Board of Directors, appointed by PSC Partners, is Mary (President), Eve (Treasurer) and Rachel Gomel (Secretary).
When asked what her favourite part about being involved with PSC Partners was:
“My involvement is my way of doing everything that I possibly can to change the future of those affected by PSC. Originally this was motivated by my love for my kid, but my motivation has now grown to include the extended family of PSCers worldwide. In all honesty, I think this work helps me more than anybody else - it gives me a reason to keep my PSC thoughts focused on hope and progress, rather than worry. Working together with such incredible people brings me energy, fun, and the knowledge that together we can make a difference.”
CLICK HERE
to read
Jess T. interviewing Mary about her work
with PSC Partners and what she has to say about otters!
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PSC Partners Seeking a Cure has provided patients and caregivers around the world a place to go to for support and information about this rare and uncertain disease. The PSC Patient Registry is an example of this, offering both confidentiality to the registrant and hope for a future without PSC.
PSC is a rare disease with no effective treatment or cure. The patient registry is a place where patients can confidentially store and keep track of their medical data. This data collected provides researchers with essential information to recruit patients for trials and and gives them one place to find reliable, relevant information about PSC so that they can effectively work towards finding treatment, all while keeping patient identities concealed.
Here’s your chance to help speed up PSC research and provide a piece to the puzzle. Join the registry. You can sign up as a patient or patient guardian. It takes less than 30 minutes, and it makes a world of difference! Go to:
PSCPartnersRegistry.org
If you have already joined, then please spread the word to others and encourage them to take part.
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Crafted by Community
Content created by members of the Canadian PSC community
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Organ Donation in Canada
Authors:
Kristian & Jennifer Stephens
Did you know that in 2017 in Canada, about 4,333 people waited for a new kidney, liver, intestine, lung, heart or pancreas across Canada? This data was obtained from the
Canadian Institute for Health Information
(CIHI). While 2,979 organ transplants were performed in 2017 in Canada (including about 570 liver transplants (CIHI)), this left over one-thousand people still on the waiting list. According to CIHI, about 256 people died in 2017 while waiting for a new organ. But, you can help – just by registering as an organ donor.
By becoming an organ donor, you can save the lives of up to eight individuals and influence countless others impacted by the lives of these eight people. You can even enhance the lives up to 75 people by giving your healthy tissue. Organs and tissues that can be donated include the kidneys, liver, heart, pancreas, lungs, small intestine, eyes, bone, skin and heart valves.
Although, each Canadian province has its own system for registering potential donors, the website
OrganTissueDonation.ca
contains information needed to become a registered donor in your province.
Some of the misconceptions you might not be aware of, which could influence your decision to become a donor, include:
- Your age alone will not disqualify you from becoming a donor;
- Your current or past medical history does not prevent you from registering to be a donor. Each potential donor is evaluated on a case-by-case basis;
- Organ and tissue donation does not impact funeral plans. An open casket funeral is possible; and
- All major religions support organ and tissue donation, or respect an individual’s choice.
To learn more about organ and tissue donation, please read the FAQs section on
BeADonor.ca
. Remember to discuss your wishes with your family so that they can be your voice if you are unable to speak to your wishes.
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The Loon Poll
Lulu has a question for you!
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What is the best thing about Loons?
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They meet up with their friends and hang out all day (like Canadians!).
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"Loon" means "awkward" and "clumsy" in old English / Scandinavian.
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Loons have bright red eyes, which is cool as well as terrifying.
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In future Loon Polls, Lulu will be asking Loon Duct readers PSC-related questions!
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Thank you for the support!
We are grateful to the sponsors of the 2019 Toronto
PSC Patient Meet-Up.
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We have reminders for our
Loon followers!
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Have you RSVP'd to the September 29th PSC Meet-Up in Toronto?
The
Toronto PSC Meet-Up located at the Centre for Social Innovation, the home of the PSC Partners Canada office, is just days away. Sunday September 29, 10am-2:40pm+. Tickets are required as space is limited. As of today, there are a few spaces remaining.
To see the speaker agenda or RSVP, please visit
Eventbrite >
HERE
<
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Update: the schedule has changed slightly. We are starting at 10am, ending at 2:40 pm + social time.
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If you already have your ticket for the Meet-Up, and would like to volunteer please sign-up
here
!
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The content from the 2019 conference is now online!
Check out the presentations >
HERE
<
There are also videos of the sessions >
HERE
<
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PSC Awareness Day is coming up on
October 29th
! This is a great opportunity to educate yourself and others about PSC
There are many ways to increase awareness for PSC. Help others become
#PSCaware
by learning how you can spread the word.
Whether you are a PSCer, friend, family member or health professional, you can help us spread the word! To learn more go
here
.
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PSC Partners Seeking a Cure Canada wants to connect with you!
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See us first on Facebook!
Once you have liked us on Facebook there is one more step to make sure you see our posts! Use the
SEE FIRST
option.
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To use SEE FIRST on your computer:
- Go to PSC Partners Canada Facebook page
- Hover your mouse over the Following button near their cover photo
- Select See First
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To use SEE FIRST on your mobile device:
- Go to PSC Partners Canada Facebook page
- Click/tap the three dots (...) near the top of the page
- Select Following
- Select See First
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PSC Partners Seeking a Cure Canada
is a Canadian registered charity
affiliated with
PSC Partners Seeking a Cure.
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.
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PSC Partners Seeking a Cure Canada
585 Dundas St East, Suite 300 • Toronto, Ontario • M5A 2B7 • Canada
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