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If you missed Tuesday's webinar on PSC, IBD and the COVID-19 vaccines with Drs Rutherford, Bowlus, and Korzenick, the video is now available.
youtu.be/ZQcQgs9dAeI
For Canada & Ontario specific information, UHN hosted a webinar recently as well. Not PSC or liver specific.
youtu.be/od9j2jBZsBg
Please send us a note if you have resources such as this UHN webinar about vaccine distribution in your province that you find useful!
PSC, IBD, and the COVID-19 Vaccines
youtu.be
In the first of the PSC Partners Seeking a Cure 2021 Webinar Series, our panel of experts discuss PSC, IBD, and the COVID-19 Vaccines. Moderator and Speaker:... Help advance liver research! If you are living with itching (pruritus) caused by hep B, hep C, drug-induced liver-injury, auto-immune hepatitis, or primary sclerosing cholangitis, you may be eligible to participate in a new opportunity to help researchers understand the lived experience of this condition. Your voice is important – you can play a role in scientific understanding!
Pruritus must be at an intensity level of 4 or higher on a scale of 1-10 for at least the past 8 weeks in order to participate, and patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis.
#PSC #Itching #Pruritus
With enormous sadness, we share this news item about our Canadian PSC Partners friend and transplant advocate. Jessica's life and courageous advocacy for organ donation will continue to inspire our work on behalf of all affected by PSC.
www.thechronicleherald.ca/lifestyles/regional-lifestyles/we-have-a-job-to-do-for-her-cape-breton-...
www.thechronicleherald.ca
When Jessica Tighe died from a rare liver disease last week, she didn’t just leave behind a husband, young daughter and countless family members and friends — she also left a legacy. On Thursday, Tighe, 30, lost her decade-long battle A member of the PSC community is asking: Is there a local to the Maritimes (in Canada) small group of PSCers?
Please go to the closed PSC Partners Support Group to respond.
www.facebook.com/groups/PSCPclosedgroup
News coverage from today's history-making start of presumed consent for organ donation in Nova Scotia!
"Our province is the first place in North America to have legislation that maximizes organ and tissue donations to save more lives, while fully respecting people’s ability to participate or not."
globalnews.ca/news/7583892/nova-scotia-organ-donor-families-recipients-presumed-consent-law/
globalnews.ca/news/7582651/nova-scotias-presumed-consent-law-for-organ-donation-takes-effect-2/
atlantic.ctvnews.ca/nova-scotia-organ-donation-presumed-consent-law-takes-effect-1.5271098
Good news for those needing transplant organs.
Nova Scotia organ donation presumed consent law takes effect
atlantic.ctvnews.ca
Nova Scotia’s new Human Organ and Tissue Donation Act officially came into effect Monday, becoming the first province or state in North America to pass presumed consent legislation. Guidance from Toronto Centre for Liver Disease on COVID-19 vaccine and chronic liver disease. Released 1/11/20.
The takeaway (quoted from team hepatologist, Dr. Shah)
"* COVID-19 Vaccine is STRONGLY ENCOURAGED for all people with liver disease.
*It appears safe and effective.
*People with liver disease do not appear to be at higher risk of side effects."
Please read this statement in full, and as always, speak with your health care provider to see how these recommendations apply to your condition.
And for more on PSC & COVID-19 vaccine, please attend the 1/19 6pm Central time, PSC Partners webinar. links.pscpartners.org/webinars
Mark your calendars for this important webinar. PSC, IBD, and COVID-19 Vaccines. Submit your questions early!Upcoming Webinar
PSC, IBD, and the COVID-19 Vaccines
Tuesday, January 19, 2021
This timely, important webinar is free and open to all. Click here for day-of login information. pscpartners.org/news-resources/educational-resources/webinars.html
Send questions in advance to: contactus@pscpartners.org
PSC Partners Seeking a Cure Canada #liverdisease #IBD #PSC #COVID19
Add to your New Year TO DO list:
- check your smoke detector batteries
- join/update your PSC Patient Registry!
The clinical survey in the registry is intended to be updated periodically - Doing it annually is a great goal. Or whenever there's been a change in your PSC/IBD or treatment.
Both are excellent investments of your time! One can even bring us closer to our collective goal of finding treatments for PSC!
www.pscpartnersregistry.org
Canadians, and others not living in the US - the patient registry is open and seeking participation from PSCers everywhere.
Please see the note below from PSC Partners about the New Year and your registry participation. This is a great New Year practice! Join the registry if you aren't already a participant! And if you already are a participant, take 30 minutes to re-take and update the clinical survey. The collection of your responses over time makes the registry even more valuable.
Ping the registry team at registrycoordinator@pscpartners.org if you have any questions, concerns. And if there's something stopping you from joining - let them know!
You may have seen that PSC Partners recently published a provider map for the US health providers. A source of provider information that includes patient-reported providers in Canada is in the patient registry. Once in the registry, the participant can add their provider to the map, and can explore other patient-reported providers around the world.
New Year to do list: check your smoke detector batteries and join/update your patient registry! Both are excellent investments of your time! One can even bring us closer to our collective goal of finding treatments for PSC!
Happy New Year from 2021! Thank you to the many supporters who were able to send in their 2020 donations in the past few days. Despite all of the challenges of the pandemic, and with all of this support, we will continue our fight for treatments and a cure for PSC.
This year, almost $2000 was delivered to PSC Partners Canada through Facebook fundraisers. Thank you all who hosted.
We do not receive notification of who hosted these, or donated, so we haven't been able to express our gratitude!
Please take a moment and complete this form if you host a Facebook fundraiser to benefit PSC Partners Canada so we can thank you!
forms.gle/6x8zxQxTFmfa4get8
forms.gle
Please complete this form to submit information for tax receipt, notification, and recognition purposes. Thank you! If your donation is through another foundation (chimp, Benevity, United Way, Facebook, Canada Gives, etc, the tax receipt will come from that foundation). Happy New Year from PSC Partners Canada!
conta.cc
Countdown to 2021! December 30, 2020 Dear PSC Partners Canada Supporter: Please consider a donation to support the work of PSC Partners Canada during these last hours of 2020. Imagine welcoming a new A statement on COVID-19 vaccination for our PSC community from Dr. CHRISTOPHER L. BOWLUS, Co-Chair of the PSC Partners Scientific/Medical Advisory Committee
"Two SARS-Cov-2 vaccines have received emergency use authorization from the FDA with phased allocation of vaccines according to the ACIP COVID-19 Vaccines Working Group (www.cdc.gov/.../slides-12-20/02-COVID-Dooling.pdf) and individual state guidance.
Preventing morbidity and mortality and preserving social functions are the goals of the newest recommendations.
Currently, the CDC considers individuals with solid organ transplant (i.e. liver transplant) at increased risk of severe illness from the virus that causes COVID-19 and that individuals on immune weakening medicines or with liver disease might be at an increased risk for severe illness from the virus that causes COVID-19. (www.cdc.gov/.../people-with-medical-conditions.html)
To our knowledge there is no data related to severity of COVID-19 specifically in PSC patients.
Since no SARS-CoV-2 vaccine trials have enrolled immunocompromised patients, the safety and efficacy of the vaccines in PSC patients is not yet established. However, immunocompromised patients who have received recombinant protein-based vaccines (for example, Hepatitis B) have historically reported no major side effects, though efficacy is lower. More data about safety and efficacy will likely become available after clinical trials include more varied patient groups and participants are tracked long-term.
PSC patients are strongly advised to talk to their health care providers who can help them weigh the risks and benefits of receiving the vaccine.
Importantly, even after receiving the SARS-CoV-2 vaccinations, preventive measures like wearing face masks, maintaining physical distancing from those outside your household, and washing hands frequently will still be required."
A message from Sindee Weinbaum: representative of the ELPA Member Hetz, the Israeli Association For The Health Of the Liver, and the ELPA Working Group leader on Rare Liver Diseases on her decision to vaccinate.
Mark your calendars! January 19!Mark your calendars for this timely and very important webinar. It's free and open to all. Day-of login info and links to past PSC Partners webinars are here. pscpartners.org/news-resources/educational-resources/webinars.html
#PSC #PSCPartners #liverdisease #COVID19
On this last day of Hanukkah 2020, we send our wishes & dreams for a covid-free Hanukkah 2021.
A recording of the PSC Support UK livestream Q&A "Ask the Expert" session today on COVID-19 vaccines and PSC is available here. Thank you PSC Support UK for this much needed resource.
PSC Partners and PSC Partners Canada will be holding a webinar with an infectious disease specialist from UCSF 5pm Pacific time on January 19. Mark your calendars and bring your questions!
Stay tuned for details.
www.facebook.com/PSCSupport/videos/328861418101611/
Party people... if you need help navigating when your arrive at the party... event link will come to your email if you signed up at eventbrite. Your party EVENT LINK should have come to your email inbox.
Signing On
Step 1: Click on on the [EVENT LINK]
Step 2: A pop-up will show up asking to use your mic and camera. Click “Allow”
Step 3: Input your name - add PSC so people can find you! I'll be Mary PSC. Click “Join the Gathering!”
Gather.town Navigation Tips!
New places always take some getting used; to here are our tips for a smooth experience.
Key Controls
Move your character: Directional arrows on your keyboard
move your character along the map, climb stairs, and explore
Interact with an object: Press ‘X’ on your keyboard
we’ve got lots of goodies planned. See an object glowing yellow? ‘X’ will let you interact with whatever is hidden inside.
When you’re done with the object click the small x in the top right corner to get back to the party.
Move through people: Press ‘G’ on your keyboard
Feeling claustrophobic? Just like real life, you can’t walk through walls (unless you find a secret portal) but you can ‘ghost’ through people if you’ve gotten stuck behind a crowd.
Dance: Press ‘Z’ on your keyboard
Dance your heart out. We’re not kidding.
The Loon Duct has launched and should be in your inbox if you subscribe. To join our mailing list for quarterly newsletters from PSC Partners Canada, please go to: links.pscpartners.org/CanadaMailingList
fb.watch/2rnr7puWIk/
Looking for a little holiday festivity and an experiment in virtual socializing. A cross between a Zoom meetup and video game?
Thursday Dec 17, 5-8PM EST, come join us in the PSC Partners room at this multi-organization online holiday party.
Register at Eventbrite to receive your link to attend.
Full info here: conta.cc/389KxGQ
Hey All!
Join us Thursday 5-8 EST! What is this? A virtual party using the Gather platform. Put together by our co-working space ("CSI") and at which we'll have our own separate "members lounge" room for PSC Partners Canada to gather. Guests are also welcome to explore the larger party if they like.
This is being set up as a virtual party space. And I haven't seen our Gather "room" yet, but here are some tips:
1. Be sure to register via Eventbrite.. It’s how you'll be sent the Gather link to join.
links.pscpartners.org/CanadaHolidayParty
3. For ease of locating our room, look for attendees with PSC in their "name" - and we encourage you to do the same when you set your name for the event. We can easily find each other in the list of attendees to “Locate” each other and find our room.
4. You will "arrive "outside of CSI Annex, a virtual rendering of our physical office building in Toronto. After you walk inside, please take the north stairwell, which leads to the “Member Room Lounge” which includes a door labelled PSC Partners Canada. If you are lost, the locate feature is a great way to guide you there.
5. Detailed info on how to navigate the space can be found here. This is sort of like a video game with avatars for attendees, and videoconferencing to visit with each other. docs.google.com/document/d/1pmXQmiDZsg3UGSRpzMnIoFAVh3QoL_UfjnDaVb4JeCU/edit?usp=sharing
6. CSI Staff will be stationed as greeters to help your guests get to where they need to go, and CSI will also have a Tech Support link available.
7. Feel free to explore the larger party as well! There’s a cookie quest where you can win great cookies, a dance party, and a whole universe to explore, so please do not feel confined to your rooms.
SAVE THE DATE & join us for our first online party!
Details in event description. This is a community event set up by the Centre for Social Innovation, a co-working space of which PSC Partners Canada is a member. We'll have a private PSC Partners Canada event space within the larger party.
Registration is required to get your access link! links.pscpartners.org/CanadaHolidayParty
Please join us and experiment with new ways of connecting with the Canadian PSC Community! Open to family, friends, caregivers, advisors, medical community, worldwide PSC community. Let's see if we can have some fun and enjoy some holiday cheer together!
About this Event
Join PSC Partners Canada and the Centre for Social Innovation for this online holiday bash. PSC Partners Canada will have a separate meeting room within this larger "make the world a better place" CSI community gathering.
CSI is all about community. Gathering is what we do. While we can’t host IRL cocktail/mocktail or cookie competitions this year, or dance in the Annex Garage all night, we CAN host a blow out, COVID-safe, online party - CSI-style.
Enter Gather.Town. It’s a virtual gathering space built to mimic real life interactions. Walk up to people and their videos and voices appear on your screen. Walk away and they disappear. Just like real life, almost. We love it and we can’t wait to share the spaces we’ve built with you.
Chat, play games, explore with coworkers, go it alone and meet other members. A virtual gathering to celebrate all we’ve accomplished (and endured) this year. Gather with the community to celebrate the holiday season and mark the end of a year we’re not soon to forget!
Event Schedule
5pm The Holiday Gathering begins: Gather.town & GoogleMeet open, The Cookie Quest Commences
5-7pm Tarot Readings with Laura
6pm Making the Perfect Holiday Drink with Temperance Cocktails
7pm A Holiday Wish - remarks from Tonya Surman, CEO, CSI Toronto
7:15pm The Annual BowTie Award honouring the excellence of a community member
7:30pm Dance, Explore, and Chat the night away!
Join us for the best virtual party of the holiday season.
Accessibility of the Event
The Holiday Gathering is being hosted through a combination of the Gather.town platform and GoogleMeet conferencing service.
Attendees will be sent a link to sign into CSI’s Gather.town space where they can log-in to move around a grid map of a virtual world, and speak or chat with other attendees through video and text chat based on their proximity to one another on the map.
Alternatively, attendees can book an EventGuide and obtain a dedicated conference link to join from their computer or call from their phone. The Event Guide will present the gather.town world to them via screen sharing and live voice description.
More info on the EventGuide at the registration page on eventbrite.
Another benefit for those of us living in chilly Canadian winter - multiple layers in this mask help keep your face toasty while doing your holiday errands!
PSC Awareness! COVID-19 Safety! Toasty cheeks ;-)
Get yours now! links.pscpartners.org/maskeradeCa for a suggested donation of $10.
PSC PATIENT COMMUNITY: HAVE YOU HAD OR SUSPECT HAVING HAD COVID-19? PSC RESEARCH NEEDS YOU!
This is an urgent request to:
1. Contact Registry Director at rachel@pscpartners.org
2. Complete the PSC Partners COVID-19 survey launched in April 2020 upon seeing that there was no tool to capture COVID-19 in PSC patients. links.pscpartners.org/covidsurvey.
3. If you haven't joined the PSC Partners Registry, do join! Your de-identified data is crucial for research. www.pscpartnersregistry.org
If you are a registry participant and have had COVID-19, please update your surveys. The Clinical Survey has a short section on COVID-19.
We're together in the fight, whatever it takes!
the Registry Team
Finding a way to smile and laugh in the midst of COVID-19, PSC, and 2020. Stay safe everybody, wear your mask, and join the PSC Partners MASK-erade! Raising spirits and #PSCAware ness!Did you know that Ugly Sweater Day is just 11 days away? Yep - Dec. 18th. What goes better with an ugly sweater than a beautiful PSC Partners mask? Order your mask today, take a photo wearing it with your ugly sweater, and post. Let's share the fun and spread awareness about #PSC. Masks can be mailed in US and Canada. Supplies limited. Get info here: pscpartners.myetap.org/fundraiser/2020Mask-erade/
#PSCPartners #liverdisease
Stay safe and encourage PSC awareness at the same time! Join the PSC Partners MASK-ERADE! Delivery available in US and Canada. conta.cc/2JNycPP
December 1, kicking off the season of sharing! 2020 has been such a hard year. If you are able to support PSC Partners Canada, Giving Tuesday 2020 is a good day to make an annual gift. Know your gift will be extra appreciated during these difficult times.
We are working harder than ever to fund research towards treatments and a cure for PSC.
Give online here: my.charitableimpact.com/campaigns/psc-partners-canada-ongoing-campaign
Other options: pscpartners.ca/how-to-donate/
PSCers awaiting transplant or post-transplant may find this upcoming webinar from Canadian Donation and Transplantation Research Program of interest.💻 CDTRP SPECIAL WEBINAR 💻
Join us for a 90-minute webinar on Friday, November 27 to openly discuss the challenges and anxieties patients, families and donors may face concerning the 2020 Holiday Season.
Register for free here 👇https://cdtrp.zoom.us/webinar/register/WN_bNg8zF-CQnur7JmQ5lOLMg
From a Canadian hepatologist with a front-row seat to hepatology during a career spanning 1978-2019: doi.org/10.3138/canlivj-2020-0021
Reminiscences of a soon-to-be ex-hepatologist | Canadian Liver Journal, Morris Sherman, MBBCh, PhD, FRCP(C)
Well worth a read for an overview of what's happened and where things are going. And congratulations on your retirement Dr. Sherman!
Starting in 25! Don't miss it - the final webinar in the 2020 PSC Partners Conference series. PSC: Research and Predictions with Johannes Hov, Gideon Hirschfield, Tom Karlsen and Lisa Forman. Norway, Canada, Colorado. Join us!
pscpartners.org/.../educational.../webinars.htmlJust 30 minutes until the PSC Partners webinar featuring an amazing panel of #PSC international experts. It's free and open to all. Join the conversation. pscpartners.org/news-resources/educational-resources/webinars.html
Awareness day! Instructions for FB profile frames below.Remember to put a frame around your profile photo in honor of PSC Awareness Day. Just click on Edit, add frame, and choose the PSC Partners frame. You can even schedule it to be removed on Oct. 30. Easy-Peasy. Thank you! #PSCaware
Live Now! Join us!!!The countdown has begun...Just 30 minutes until the start of the Making Our Voices: Patient-Focused Drug Development Forum. You don't want to miss this once-in-a-lifetime event. Visit our website to join the Livestream event. pscpartners.org.
PSC Partners Seeking a Cure Canada #PSCVoicesPFDD
Calling all PSCers, family, friends, and caregivers of PSCers. Don't miss the Making our Voices Heard Meeting THIS FRIDAY OCT 23 10AM-4PM EST.
Sign up here: pscpartners.org/pfdd-forum-registration.html
Hey Canadian rare disease patients and patient advocates, CORD is doing a survey on patient access scientific journal publications. Please add your voice!
Super quick - five questions or so.
To access the survey: forms.gle/H6AiUwQ52NEfDTsu6
From CORD:
The Canadian Organization for Rare Disorders is conducting this quick survey to understand patients needs for improved access to articles in scientific journals. Your answers will help us in our advocacy work.
Thank you in advance. If you have any questions please contact us.
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
Survey: Patient and Public Access to Scientific Articles
forms.gle
The Canadian Organization for Rare Disorders is conducting this quick survey to understand patients needs for improved access to articles in scientific journals. Your answers will help us in our advocacy work. If you would like to extend an invitation for the upcoming PFDD to any of your healthcare providers, friends or family, this link may be helpful.
links.pscpartners.org/ca_invite
The 1st Anniversary Issue of the Loon Duct is out! Congrats to the Loonies team!
conta.cc/2SdJCgX
If you want to be sure to get this delivered to your inbox, please sign up at vr2.verticalresponse.com/s/websitesignupform18691697673980
Thank you Richard Ayuen and Canadian Liver Foundation for sharing this PSC journey and for raising awareness of PSC.
Timeline PhotosHave you read Sprott Magazine 2020 yet? Check out pg 16 of the inaugural edition for some familiar faces 😉
@sapisochin @tgwhf #livertransplant
ow.ly/fvJ950BxYx6
PSC Partners Canada received a lovely donation with the message "For hope and health in the Jewish new year" and we'd like to amplify these beautiful wishes for hope and health.
PSC Partners Canada wishes our Jewish family a happy and healthy NEW YEAR! Shana Tova!
Tonight! Join us!Tune in Monday evening (7:30 PM EST) for important updates on transplant, clinical trials for PSC, and where your donations go - PSC Partners' supported research.
Details can be found in your inbox if you subscribe, or here : conta.cc/2ZshevD
Tune in Monday evening (7:30 PM EST) for important updates on transplant, clinical trials for PSC, and where your donations go - PSC Partners' supported research.
Details can be found in your inbox if you subscribe, or here : conta.cc/2ZshevD
We do the work we do, and we ask this community, all of us affected by PSC, to take part, because we envision a world without the pain and loss caused by PSC. A message from a parent of a PSCer who is no longer with us. Please join our efforts, take the Our Voices survey, and attend the upcoming Making our Voices Heard meeting on October 23. Thank you.
Hey PSC family: If you haven't already filled out the Our Voices survey, please do so in honour of Tawny's 5th year re-birthday on 9/8/20! She's asking for your support!
Info on the survey and links pscpartners.org/get-involved/pfdd-meeting.html
This is a great opportunity to join the newly upgraded patient registry, or visit your existing registry account and re-take the Clinical Survey at the same time you complete the Our Voices survey!
Let's celebrate Tawny, the gift of life, Tawny's generous selfless donor, and all many caregivers, surgeons, and doctors who made this possible!
Happy re-Birthday Tawny!
Caregivers - mark your calendars and join us!Hey, Caregivers of PSC patients, including parents, spouses, siblings, and more...Our next ZoomRoom gathering is for you. Let's stay connected and support one another! Pre-registration is required. bit.ly/3geK5ZV
PSC Partners Seeking a Cure Canada #PSC #YNAZone
FREE 8-week virtual entrepreneurship training opportunity for Canadian youth (16-29) who are interested in starting their own business.
Applicant needs to self-identify as having experienced mental health and/or addiction challenges. Many folks with PSC experience depression and/or anxiety.
This program has been running for a while, and has an excellent reputation. Applications are due soon for the fall cohort - Sept 9.
Check it out!
risehelps.ca/enterprising-youth-plus/
EnterpRISEing Youth Plus | Rise
risehelps.ca
Are you 16 to 29 years old? Design your business online with EnterpRlSEing Youth Plus, a FREE 8-week entrepreneurship program which combines the accessibility and flexibility of online learning with virtual in-class support and coaching. Short-term resource for PSC paediatric patients seen at SickKids.
SickKids staff in Psychology and Social Work are offering free brief therapy sessions to support the #mentalhealth and #wellness of SickKids patients and their families during these challenging times. Email emotionalsupport.covid19@sickkids.ca to self-refer.
Thank you SickKids Foundation
Hey Canadian PSCers! If you haven't joined the patient registry and taken the Our Voices survey, do so before Monday to be eligible for the grand prize drawing - free registration to the 2021 PSC Partners annual conference, planned for Boston.
If you don't know why this is important, please take a listen to this recent interview with Dr. Gideon Hirschfield from the Toronto Centre for Liver Disease. (7 minutes)
www.pscpartnersregistry.org/component/content/article.html?id=1063
Enjoy this tongue-in-cheek trailer to see some of the features of the upgraded PSC Partners Registry! Take a tour, update your Clinical Survey if you are a participant, and JOIN if you aren't! Don't forget to take the OUR VOICES survey if you haven't yet. EVERY PSC VOICE COUNTS!
pscpartnersregistry.org
PSC patients worldwide are invited to join the PSC patient registry. Note some friendly Canadian faces have agreed to join the "face" of the registry landing page.Your PSC Partners Patient Registry Team is eager to formally introduce you to the upgraded registry website and enhanced registry program. We had a “soft launch” on July 9th, so any of you who joined or returned to the site to complete the “Our Voices” survey have had a sneak peek! It was important to let the survey have the spotlight in recent weeks, and now we’re excited to move the spotlight to the upgraded registry site.
The mobile-friendly site, found at pscpartnersregistry.org/ has a whole new look and feel, with enhanced features and additional resources. With a growing database of registrants’ de-identified medical information, the Registry remains our community’s most powerful means of advancing PSC research. The new site is not just a pretty facelift – the whole Patient Registry experience going forward will be more interactive and communicative, including updates on how your data is at work in studies and trials; information about other important PSC research; additional, focused surveys linked right to the website; and a quarterly newsletter that will launch later this year. Current registry members, your login will work at the new site.
Please help us help you – check out the new Registry site at pscpartnersregistry.org/ – we are together in the fight!!
PSC Support
PSC Support Australia
PSC Support in Israel
Primær skleroserende cholangitt (PSC) / Primær biliær cholangitt (PBC)
PSC-support (FB primary sclerosing cholangitis & transplant support)
PSC Caregivers
Albi España
Association albi
AASLD
American Liver Foundation
Canadian Liver Foundation
Community Liver Alliance
Brigham and Women's Hospital
Center for Autoimmune Liver Disease at Cincinnati Children's Hospital
American Gastroenterological Association (AGA)
National Organization for Rare Disorders, Inc. (NORD)
Canadian Organization for Rare Disorders
EURORDIS - European Rare Diseases Organisation
Chan Zuckerberg Initiative
“When my family was attacked by PSC, I wanted everyone in the world to help me fight. Of course, the world continued to function as usual. We now have an opportunity to have drug developers and researchers help us battle PSC. They bring experience and resources used to defeat other diseases to our battle with PSC. We need to help the drug developers and researchers understand how PSC impacts your life and/or the life of a loved one. In addition, we want them to know that we are passionate about finding a cure for PSC. Our information about PSC will encourage them to join our fight and provide them information to develop a battle plan to help defeat PSC. So, how do we provide them information? We complete OUR VOICES Survey. Completing the survey could be the most important tool we have at this moment to beat PSC.
Please take a few minutes to complete OUR VOICES Survey."
Dr. Willie McKinney, PSC Caregiver and Board Member, PSC Partners
Get more info and a link to the survey here: pscpartners.org.
PSC Partners Seeking a Cure Canada #psc #pscpartners
When asked about the importance of the OUR VOICES Survey, Dr. Veronica Miller, Executive Director of the Forum for Collaborative Research and Professor (Adjunct) at UC Berkeley School of Public Health, said, "Each individual affected by PSC faces so many challenges that could be ameliorated by safe and effective treatments, if they were available. What will it take to get such treatments developed and available? It will take strong and dedicated commitment from ALL stakeholders to tackle the stubborn roadblocks in drug development for PSC. But the most important voice is the voice of the PSC community. Only the patients and caregivers can tell the story of living with PSC, what treatments they need, and talk about their willingness to participate in clinical trials testing the safety and efficacy of new treatments. The OUR VOICES Survey is a unique opportunity to make each individual voice count and let the drug developers, clinical researchers, and the FDA know that the PSC community stands ready to make this happen. Your voice will be heard in the OUR VOICES Survey.”
Get more info and a link to the OUR VOICES Survey here. pscpartners.org/get-involved/pfdd-meeting.html
An upcoming virtual conference from our friends at CALD - patients and families living with paediatric autoimmune liver disease are invited. This is a fantastic opportunity to learn from and interact with PSC paediatric specialists.It is my great pleasure to invite you to the A-LiNK Community Virtual Conference at Cincinnati Children’s Hospital Medical Center.
This conference is sponsored by the Center for Autoimmune Liver Disease (CALD) at Cincinnati Children’s Hospital Medical Center and will offer a comprehensive discussion and update on the ongoing development of a pediatric AILD-specific learning health system (A-LiNK) within the existing infrastructure of ImproveCareNow. In which healthcare, continuous improvement, technological innovation, social infrastructure, and research are purposefully integrated.
It is our hope that you will be able to interact as scientists, patients, families, physicians, stakeholders, and advocates to identify the best practice variability relating to treatment protocols and develop outcome measures to form the basis of future efforts.
I’d like to thank each of you for considering attending our conference and bringing your expertise to our gathering. I would like to express my sincere appreciation to all the participants, financial sponsors, supporting organizations, and committee members who will make this first A-LiNK Community Conference successful.
- Amy Taylor, MD
For more information & to register: www.globalcastmd.com/shows/details/alink2020
And now a message from our motivational coach, honorary Canadian, and hockey star. Thanks JV!
We are seeking PSC voices from everywhere in the world. The more of us who speak up, the more we will be heard.
A message and some laughs from Ken and family to all the MALES living with PSC. Be like Ken, and please take the OUR VOICES survey!
Link to THE EMAIL from Mary with full info on the survey and how to take. conta.cc/2PLdYWP
Paediatric PSC Webinar Wed night! Join us!
link to webinar can be found here: conta.cc/3gN1Wbg
New publication: An important review of state-of-the-art of patient-reported quality of life measures and use for PSC (and PBC) research and clinical trials. Thank you authors, including @PSCPartnersSeeking aCure Ricky Safer and Rachel Ciaves.
"Given significant gaps in our current knowledge regarding patient experiences and preferences, more qualitative studies and systematic approaches for incorporating the patient voice are needed in current research endeavors, including clinical trials, among patients living with PBC and PSC."
If you haven't already, please complete the Our Voices survey to help incorporate your patient voice into the upcoming meeting with the FDA. pscpartners.org/get-involved/pfdd-meeting.html
link to paper: A Systematic Review of Patient‐Reported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis
aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep4.1567
A public appeal for a living liver donor for Daniel White, PSCer in Ontario. Spread the word!
Take 2 minutes to hear from PSC Partners CEO Ricky Safer about why taking the Our Voices survey this week is so important. And while these survey results will be used to bring OUR VOICES to a meeting for an FDA (US regulatory) audience, the way drug development usually happens is that new meds come to larger markets first, either through the FDA or through the EMA, so helping the FDA help PSCers will impact PSCers worldwide.
pscpartners.org/get-involved/pfdd-meeting.html
NYT article on the impact of invisible disabilities. The author has a strong opinion on the decision to stay private. What do you think?
www.nytimes.com/2020/07/10/style/invisible-disabilities.html?smid=nytcore-ios-share
What Happens When You’re Disabled but Nobody Can Tell
www.nytimes.com
The author and clinical psychologist Andrew Solomon examines the disabilities that ramps and reserved parking spots don’t address. Today is our webinar: The Basics of Primary Sclerosing Cholangitis (PSC). No reservation needed. Just click here for login info. pscpartners.org/news-resources/educational-resources/webinars.html
Listen to four experts from UCHealth : Dr. Lisa Forman, Dr. Michael Kriss, Dr. James Burton, and Dr. John Norvell.
#PSC @PSCPartnersCa #liver
Don't miss it! 4th in the 2020 Patient Conference Webinar Series.Next Tues. is the 4th in our PSC Partners 2020 Conference Webinar Series: The Basics of PSC.
From PSC 101 to Interpreting Test Results to Symptom Management, this webinar has it all!
It's free & open to all. Click here for login info. bit.ly/3ge2mXp
#PSC #PSCPartners2020 #LiverDisease UCHealth Children’s Hospital Colorado
Parents of paediatric PSCers - Dr. Ricciutio, SickKids (Toronto, ON) gastroenterologist, will be presenting her research on paediatric IBD/PSC at the CALD journal club at 2pm EST this Friday. PSC patients and caregivers are invited to attend and participate in the journal club. Thank you Center for Autoimmune Liver Disease at Cincinnati Children's Hospital for hosting!We'd like to introduce our speaker for this week's Journal Club, Dr. Amanda Ricciuto!
She will present about how Children with primary sclerosing cholangitis (PSC) often have inflammatory bowel disease (IBD). However, the type of IBD that happens in kids with PSC seems to be different (than in kids who do not have PSC). It affects different spots in the gut and the inflammation seems to be more “silent” (in other words, there can be inflammation in the gut with relatively few symptoms). Kids with PSC and IBD also seem to be shorter and lower weight.
Dr. Amanda Ricciuto completed her medical degree and General Pediatrics training in Montreal at McGill University. She completed fellowship training in Pediatric Gastroenterology at SickKids, including advanced training in the management of paediatric inflammatory bowel disease (IBD). During that time, she obtained a PhD in Clinical Epidemiology and Health Care Research at the Institute of Health Policy, Management and Evaluation at the University of Toronto. Her PhD focused on IBD-associated liver disease. Dr. Ricciuto’s areas of specialty include pediatric inflammatory bowel disease and IBD-associated liver disease, particularly primary sclerosing cholangitis (PSC).
Join us Friday, July 10 @ 2pm EDT for this Zoom Meeting: zoom.us/j/91829170908?pwd=NHR2MFU0MFV1UEpkRHFkS1RGallGQT09
(Reminder to download the Zoom APP prior to the meeting)
#AIH #PSC
From PSC Support UK: This week, the PSC Wellbeing Project researchers published an article that provides an in-depth look at:
- how PSC can impact psychological wellbeing,
- how psychological distress arises
and includes advice tailored to individuals, families and health professionals on how to best support each other.
The UK PSC patient community has been incredibly engaged in helping the efforts of PSC Support to drive forward much-needed PSC research, not only towards a cure but also to address the emotional burden of living with this complex, incurable disease. One of our bigger asks was for PSC patients and those who support them to join virtual online groups to talk about how PSC affects them over four weeks for the PSC Wellbeing Project. If this was you - THANK YOU! (
We'll now use these findings to advocate for better services for people living with PSC.
journals.plos.org/plosone/article?id=10.1371/journal.pone.0234624
journals.plos.org
Introduction The impact of living with Primary Sclerosing Cholangitis (PSC) on psychological wellbeing is not well-known. A recent scoping review by the authors found that both depression and anxiety frequently featured in the accounts of those living with the illness. However, less clear were the f... One of our Canadian PSCers was transplanted in Alberta yesterday with a liver donation from a living donor. Both surgeries were executed without concern or complication.
Sharing this to express gratitude for the medical pros who make this possible. And gratitude for the extraordinary gift from the donor. And holding both the donor and the PSCer close in thought as they begin to heal.
Here's a nice read about a Canadian physician experiencing living donation from the patient perspective. www.cmaj.ca/content/192/26/E729
Living donor liver transplant between physicians: two viewpoints
www.cmaj.ca
I saw the snake, but not in time. Its bite was not life threatening, and I received antibiotics for the cellulitis that ensued. That was March 2018 in Southeast Asia. What followed was months of fever and chills, and two months of rash, skin sloughing and arthralgias. I was diagnosed with Stevens– Paediatric PSC-IBD research by investigator Amanda Ricciuto and colleagues at Toronto's SickKids:
"The finding of subclinical inflammation highlights the need for disease monitoring strategies that extend beyond symptom assessment,” Ricciuto and colleagues wrote. “In addition, recognition of the unique IBD phenotype may facilitate earlier recognition of PSC, at a stage when the mechanisms that underlie progressive biliary inflammation and fibrosis are best elucidated and much needed therapeutic interventions developed.”
www.cghjournal.org/article/S1542-3565(19)30970-X/abstract
www.healio.com/news/gastroenterology/20200616/pscibd-linked-with-greater-growth-impairments-among...
PSC-IBD linked with greater growth impairments among children
www.healio.com
Features of inflammatory bowel disease differed between children with primary sclerosing cholangitis and those without it, similar to adult patients, according to study results. “Despite the mild clinical activity of IBD in patients with PSC, lack of symptoms does not always indicate lack of m... Anyone connected to a rare disease is invited to submit art for this 2020 RareARTist competition. Open to Canadian artists, as well as from anywhere in the word.
Cash prizes, an exhibition of your work online and during rare disease week in RL. Check it out!Attention all Rare Artists!
The 2020 Rare Artist contest opens for submissions on June 16th!
Anyone who is connected to the rare disease community is encouraged to submit their artwork via Facebook or email.
The Rare Artist Contest exhibits the unique gifts of individuals affected by rare disease and promotes the expression of their stories through art.
For more information please visit: rareartist.org, and stay tuned!
#RareArtist2020 #raredisease
This looks like good information as we all make decisions about managing risks during summer activities! Monday June 15, free webinar from our friends at AIHA in partnership with CALD.
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
We are saddened by these difficult times. As we all work to solve the many problems out there, PSC Partners will continue our mission to educate and support our PSC community. In that light, please join us for the COVID-19 webinar tomorrow night, 7 p.m. EDT. Visit our website for login information. links.pscpartners.org/WebinarInfo
Thank you for pointing out that the COVID-19 time presents a unique opportunity for families to have that family conversation about death and wishes regarding organ donation.
See below for local news (Muskoka, ON) coverage of what it is like for immune compromised patients during COVID-19. Thank you Sandra MacNeil Holdsworth, a post-transplant (due to PSC) patient advocate, for your continued advocacy for organ donation.
A reminder. If you have/ had/ or suspect having COVID-19, and have PSC or have had a transplant due to PSC, please complete this short survey to help us understand if and how PSC patients are affected by COVID-19. IRB approved (institutional review board to protect patients) and de-identified data will be shared with the PSC community. Thank you!Have you had or suspect having COVID-19? Please complete this brief 10-minute survey to help understand the impact of COVID-19 on PSCers. If this doesn’t apply to you, please share this notice as widely as you can, so that we don’t miss anyone! Stay safe!
To take the survey, please click here: forms.gle/hwQApfkFWJfzF7CM9
Join us!!!We're excited to announce the 2nd Webinar in our 2020 PSC Partners Conference Series. We hope you will join us. Visit the COVID-19 page on our website for login information. bit.ly/3eq5tL2
Send questions ahead of time, by June 1st, to contactus@pscpartners.org
#COVID19 #PSC #PSCPartners PSC Partners Seeking a Cure Canada
Tonight 7pm EST. COVID-19 and IBD Q&A with Canadian IBD nurses. You can sign up to receive the recording as well.Join us May 21st at 7 p.m. - 8 p.m. ET for our COVID-19 and IBD Updates webinar! ⭐️
THIS WEEK: Learn from IBD nurses dedicated to ensuring people living with IBD receive high-quality clinical nursing care. They will answer the questions they most commonly receive from their patients about COVID-19 and IBD. 👩⚕️👨⚕️
As always, to watch our webinar, you can register here 🔗: bit.ly/35pCYK6
Be sure to submit your questions while registering for the webinar!
Can't join us on May 21st? We encourage you to still register, as we'll be sharing a link to the video recording once it's available 💻.
Good to see liver transplant activity starting up again in Toronto for PSCers and for any who need them. Meet Colby D. a PSCer originally scheduled for LDLT transplant on April 6.
Thank you Dr. Wong-Rieger for your representation. Please take 10 minutes to watch this important address speaking to Canadian rare disease strategy and access to rare disease medications in Canada. PSC Partners Canada is one of the member organizations of CORD.
PSC Partners launched their new website today! Congratulations!
Check it out! Shown here, the upgraded page directing folks to their affiliate in Canada!
www.pscpartners.org/
This may be of interest to Canadians in Ontario. A Q&A with experts in infection control and pandemic modelling at UHN/Toronto General.
WHEN: Thursday, May 7, 2020
TIME: 3 – 4 p.m.
REGISTER: tgwhf.ca/livestream
"What does life look like once the economy starts to open up, when businesses re-open their doors and people venture outside with the better weather? Many of you have questions and we're happy to offer you an opportunity to hear directly from two of UHN’s leading experts in infection control and pandemic modelling.
Please join us for our third COVID-19 Live Stream Q&A with:
Dr. Alon Vaisman: Infection Control Physician, University Health Network
Dr. Beate Sander: Director of Population Health Economics Research, Toronto General Hospital Research Institute, UHN
In advance of the live stream, learn about Dr. Sander's research in pandemic modelling here.
Once you register, you will be able to submit questions for our experts in advance."
#GivingTuesdayNow, today on May 5, emphasizes opportunities to give back to communities and causes in safe ways that allow for social connection and kindness even while practicing physical distancing.
If you are able, we hope you will support us in our efforts to find treatments and a cure for PSC. Thank you.
pscpartners.ca/how-to-donate/
Teen PSCers from everywhere welcome! Mark your busy zoom calendars! Thursday May 7th, 8pm EST.
Registration Required: bit.ly/2xmiOEt
Please pass this info. on to PSCers aged 13-20!
Join us this evening!Just three hours until the first in our 2020 PSC Partners Conference Webinar Series. Click here for link to login information and call-in info. See you (virtually) soon.
pscpartners.org/psc-and-covid-19/
PSC Partners Canada! It is gratifying to be able to see results from all of our hard work.
Together: we donated, we asked our friends and family to donate, we held fundraisers. In 2016, the first PSC Partners Canada research grant was made. In 2017, the second was made, to a researcher, Dr. Yury Popov, at Harvard.
Dr. Popov has announced that results stemming from the research funded, in part, by PSC Partners Canada, have been accepted for peer-reviewed publication.
The conclusion?
"EDP-305, novel FXR agonist, potently suppresses liver injury and fibrosis in mouse models of liver disease. Compared to first-in-class drug obeticholic acid, it demonstrates favorable therapeutic profile and does not negatively impact the biliary tree. These results support clinical trials with EDP-305 in biliary diseases and NASH, and has important implications for novel drug design."
doi.org/10.1111/liv.14490
(pictured here in 2017 with PSC Partners Canada board members at AASLD)
Join us Wed evening! And bring questions related to the intersection of PSC / COVID-19 / and psychological health.Today is the last day to submit questions for the Wednesday Webinar. Send questions to contactus@pscpartners.org.
For webinar login information, visit pscpartners.org/psc-and-covid-19/
#PSC #PSCPartners #LiverDisease
- Toronto, Ontario
- (647) 848-6953
- contactus@pscpartners.ca
