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 š
@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
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 āsoft launchā on July 9th, so any of you who joined or returned to the site to complete the āOur Voicesā survey have had a sneak peek! It was important to let the survey have the spotlight in recent weeks, and now weāre 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 registrantsā de-identified medical information, the Registry remains our communityās most powerful means of advancing PSC research. The new site is not just a pretty facelift ā 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 ā check out the new Registry site at pscpartnersregistry.org/ ā we are together in the fight!!
PSC Support
PSC Support Australia
PSC Support in Israel
PrimƦr skleroserende cholangitt (PSC) / PrimƦr biliƦr cholangitt (PBC)
PSC-support (FB primary sclerosing cholangitis & transplant support)
PSC Caregivers
Albi EspaƱa
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
āWhen 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.ā
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 Childrenās Hospital Medical Center.
This conference is sponsored by the Center for Autoimmune Liver Disease (CALD) at Cincinnati Childrenās 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.
Iād 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
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 PatientāReported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis
aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep4.1567
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 Youāre Disabled but Nobody Can Tell
www.nytimes.com
The author and clinical psychologist Andrew Solomon examines the disabilities that ramps and reserved parking spots donāt 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 Childrenās 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 āsilentā (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. Ricciutoās 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 Stevensā 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,ā Ricciuto and colleagues wrote. āIn 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.ā
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. āDespite 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
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
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 doesnāt apply to you, please share this notice as widely as you can, so that we donāt 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
The Role of Diet and Nutrition in PSC - Recruiting US PatientsThe PSC Collaborative at the Brigham and Women’s Hospital is recruiting patients with PSC for a pilot research study to investigate the role of diet and nutrition in the development and treatment of PSC. We are asking you to take part in this research study because you are an adult patient with PSC.
Please note that we do not plan to fully initiate the study until after the COVID-19 shutdowns have subsided. Non-COVID-19-related research at Brigham and Women’s Hospital has slowed down, and we feel that the ongoing pandemic would have a substantial impact on the routine diet of most participants. We are introducing the study to the PSC Partners community in our efforts to keep the project moving forward. We are eager to collect the names and contact information (email/phone) of anyone who is interested in participating in the near future.
Why is this research study being done?
The study will evaluate the feasibility of two different dietary interventions – the low sulfur/vegan diet versus the specific carbohydrate diet. We believe that altering diet may have an impact on the disease by altering the microbiome, bile salts, fatty acids, immune function or other factors. The samples and information we collect in this study may advance other research to help individuals with PSC worldwide.
Who is eligible to participate in this study?
We are looking for participants with PSC and IBD between the ages of 18 and 70 years who are currently living in the United States
Participants may be referred by physicians nationwide, as the study can be conducted remotely
We plan to enroll 20 subjects
What will happen in this study?
Participants will be randomly assigned to either diet and will receive dietary education from our team of dieticians, including educational materials and recipes
The study will involve 7 remote video visits with a registered dietician at Brigham and Women’s Hospital, as well as intermittent collection of bloodwork and stool
The study will take about 14 weeks to complete
Participants will also receive a food procurement stipend of $600.
If you’d like to speak with the study team regarding any aspect of the study, please feel free to contact
us at PSCresearch@bwh.harvard.edu or at (617) 732-9481.
Thank you for your participation,
Joshua Korzenik, MD
Director, Resnek Family Center for PSC Research
Director, Crohn’s and Colitis Center
Brigham and Women's Hospital
75 Francis Street
Boston, Massachusetts 02115
The Role of Diet and Nutrition in PSC - Recruiting US PatientsThe PSC Collaborative at the Brigham and Women’s Hospital is recruiting patients with PSC for a pilot research study to investigate the role of diet and nutrition in the development and treatment of PSC. We are asking you to take part in this research study because you are an adult patient with PSC.
Please note that we do not plan to fully initiate the study until after the COVID-19 shutdowns have subsided. Non-COVID-19-related research at Brigham and Women’s Hospital has slowed down, and we feel that the ongoing pandemic would have a substantial impact on the routine diet of most participants. We are introducing the study to the PSC Partners community in our efforts to keep the project moving forward. We are eager to collect the names and contact information (email/phone) of anyone who is interested in participating in the near future.
Why is this research study being done?
The study will evaluate the feasibility of two different dietary interventions – the low sulfur/vegan diet versus the specific carbohydrate diet. We believe that altering diet may have an impact on the disease by altering the microbiome, bile salts, fatty acids, immune function or other factors. The samples and information we collect in this study may advance other research to help individuals with PSC worldwide.
Who is eligible to participate in this study?
We are looking for participants with PSC and IBD between the ages of 18 and 70 years who are currently living in the United States
Participants may be referred by physicians nationwide, as the study can be conducted remotely
We plan to enroll 20 subjects
What will happen in this study?
Participants will be randomly assigned to either diet and will receive dietary education from our team of dieticians, including educational materials and recipes
The study will involve 7 remote video visits with a registered dietician at Brigham and Women’s Hospital, as well as intermittent collection of bloodwork and stool
The study will take about 14 weeks to complete
Participants will also receive a food procurement stipend of $600.
If you’d like to speak with the study team regarding any aspect of the study, please feel free to contact
us at PSCresearch@bwh.harvard.edu or at (617) 732-9481.
Thank you for your participation,
Joshua Korzenik, MD
Director, Resnek Family Center for PSC Research
Director, Crohn’s and Colitis Center
Brigham and Women's Hospital
75 Francis Street
Boston, Massachusetts 02115
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! āļø
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. š©āāļøšØāāļø
As always, to watch our webinar, you can register here š: 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 š».
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 ā 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 UHNās 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/
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
A love letter from PSC Partners to the PSC community. Missing our annual in-person gathering! Take a moment, and enjoy some good feels. Thank you Jen for putting this together!
2019 PSC Partners Conference Slide Show
youtu.be
This video is about 2019 PSC Partners Conference Slide Show Hey Quebecers - Does anybody have resources around employment rights in Quebec with respect to isolating? This is the situation from a follower, who has asked us to post this question: Young family member with psc/aih and currently immuno suppressed. Adult is currently working in a shop, where they are not respecting public safety measures recommended for COVID 19. They are afraid for they young PSCer. Does anyone know if you are allowed to refuse to work? Please share any resources you know of in the comments. Thank you.
š¾ššššæ-19 šš§š¤š£š©š”šš£š ššš„š¤š§š©: šæš¤šš©š¤š§šØ šš£ š šš¤š© šš¤š£š
šš§šš ššššš£šš§
5 š„.š¢. ššš, šš¤š£ššš®, š¼š„š§šš” 27 šššš š¤š£ š©šš š¼šŖš©š¤šš¢š¢šŖš£š ššš„šš©šš©ššØ š¼šØšØš¤šššš©šš¤š£āšØ šššššš¤š¤š š„ššš
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The third webinar in our series, titled šš³š°šÆšµššŖšÆš¦ šš¦š±š°š³šµ: šš°š¤šµš°š³š“ šŖšÆ š¢ šš°šµ š”š°šÆš¦, will feature adult and pediatric hepatologists who will share their experience working on the frontlines at hospitals in New York City. An infectious disease specialist will also give an update on new developments in the pandemic, focusing on important news for autoimmune liver disease patients.
---
What questions do you have for our presenters? Email info@aihep.org by 9 a.m. Friday, April 24 with topics youād like to have covered.
---
The Autoimmune Hepatitis Association (AIHA) is hosting this free bi-weekly webinar series called šš¶šµš°šŖš®š®š¶šÆš¦ ššŖš·š¦š³ ššŖš“š¦š¢š“š¦ š¢šÆš„ šµš©š¦ ššššš-19 šš¢šÆš„š¦š®šŖš¤: šš³š°šÆšµššŖšÆš¦ šš¦š±š°š³šµ in partnership with the Center for Autoimmune Liver Disease at Cincinnati Children's Hospital(CALD).
How and when to restart medical services and hospital procedures for chronic health conditions - still working to figure it out and balance the risk of COVID-19 vs. the risks from postponed in-person or in-hospital care for chronic health conditions.
Hospitals mull restart of paused services
www.theglobeandmail.com
After thousands of procedures were postponed to make way for potential surge of COVID-19 patients, experts say "Never give up! Believe in yourself, accept failure, don't compromise on your most important values. Walk the walk and learn to adapt. Make time count instead of counting time."
A message left to us all from Brian Bisaillon, Canadian PSCer who passed away this past week waiting for transplant.
We send our heartfelt and deepest condolences to all who loved Brian.
obituaries.sudbury.com/viewObit.php?obit_id=43091
Sudbury Obituaries - Sudbury.com
obituaries.sudbury.com
Sudbury.com Obituaries - Obituaries for Sudbury, Ontario 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 doesnāt apply to you, please share this notice as widely as you can, so that we donāt miss anyone! Stay safe!
To take the survey, please click here: forms.gle/hwQApfkFWJfzF7CM9
See us first on Facebook!
During these days of so much happening online, make sure you see PSC Partners Canada content in your feed! Use the SEE FIRST option! Instructions:
Step 1: Like the PSC Partners Canada page. www.facebook.com/PSCPartnersSeekingACureCanada/
Step 2: Use SEE FIRST
On your computer:
- Go to PSC Partners Canada Facebook page
- Hover your mouse over the Following button near the cover photo
- Select 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
The requirements for the Canada Emergency Response Benefits program have opened up. If you did not previously qualify, you might now.
You are now eligible if all the following apply to you:
You reside in Canada
You are at least 15 years old
You earn less $1000/month
You have not voluntarily quit your job
You have had income of at least $5,000 in 2019 or in the 12 months prior to the date of your application. (Note: This $5000 does not have to have been earned in Canada
ā¦ and at least one of the following applies to you:
You have stopped working because of COVID-19
You were expecting a seasonal job, but itās now gone
Youāve run out of EI since January 1
We hope these changes mean that help is now available to those who need it.
A step-by-step guide from our friends at Centre for Social Innovation
socialinnovation.org/csi-supports-cerb-application-walk-through/?mc_cid=e5ab332652&mc_eid=7181736527
CSI Supports: CERB application walk-through
socialinnovation.org
IMPORTANT NOTE: The requirements for the Canada Emergency Response Benefits program have opened up. You are now eligible if all the following apply to you: You reside in Canada You are at least 15 years old You earn less $1000/month You have not voluntarily quit your job You have Canadian author and PSCer Laura Bradbury sharing her advice for living with uncertainty.
www.touchwoodeditions.com/at-home-with-laura-bradbury/?fbclid=IwAR3S8fuVnIStbTjEsciluJhcNTAtuFqZl...
At Home with Laura Bradbury - TouchWood Editions
www.touchwoodeditions.com
A Note from the publisher Weāre living in an unprecedented moment in history, and itās been amazing to see how people are pulling together to support one another. Here at TouchWood weāve decided to ask our authors what has been keeping them busy during a time when weāve all been asked to sta... A great resource for PSCers everywhere. Recording available here. Thank you CALD and Autoimmune Hepatitis Association! Webinar #2: Coping with the Crisis
Super-useful open data collection of Canadian COVID-19 resources! Check it out. Add to it.
From the site:
This is a Canada-focused list of resources (information, data, best practices, etc) meant to help us deal with the COVID-19 Pandemic
helpwithcovid.ca was initially conceived from a brainstorming session with ~40 open data community members across Canada. The discussion was held by the Canadian Open Data Society (CODS) Working Group to find ways we could contribute to help with the COVID-19 pandemic.
It is currently managed by a group of librarians (many of whom came initially from the open data community) which you're welcome to join, and was created by members of the Canadian Open Data Society.
The resource guide is modeled after the UK's successful CoronavirusHandbook.com, and we are grateful for their support, advice, and guidance in this project.
Our Hopes and Goals: Information saves lives. We hope that collectively the information we know and help spread can provide someone reading this guide the resources they need.
Taking control and doing something about the situation. It's normal to feel helpless and afraid in these times, and this guide provides a very accessible way for us to help and contribute for one another. You don't need to know any code or be an expert.
Improving outcomes through inspiration and volunteerism. If you see a successful program enacted in another part of Canada (or some part of the world) and wonder why it's not here, maybe you can start it with some friends or pass it along to a group you feel can run it. You can also help with existing projects, and either approach will help us in our fight against the pandemic.
This is a Canada-focused list of resources (information, data, best practices, etc) meant to help us deal with the COVID-19 Pandemic. This crowd-sourced guide is open and written by Canadians like you, so please feel free to add to these documents directly without asking for permission. We only ask that you leave each page better than you found it, and to review the Disclaimer on this website.
helpwithcovid.ca/homewww.helpwithcovid.ca
From Voices Rock Canada, a choir of Toronto-based women physicians, a lovely and poignant message. Worth taking a moment to watch and reflect upon. With deepest gratitude to our healthcare providers.
www.youtube.com/watch?v=Wuiqee-AC-o
Choir of Women Physicians sings RISE AGAIN (virtually)
www.youtube.com
Thank you to the incredible healthcare community! Voices Rock Medicine, our very own choir of women physicians has put together this heartfelt tribute, dedic... It is Green shirt day 2020. Register. Tell Your Family. Be Inspired. greenshirtday.ca/
Please register to be a donor www.beadonor.ca/ in Canada.
Share your Green Shirt photos in the comments!
Thank you #LoganBoulet #HumboltStrong for the lives you saved by taking these two actions. Let's keep the Logan Boulet Effect going strong!
greenshirtday.ca
On April 7, 2018, Humboldt Broncos defenceman Logan Boulet succumbed to his injuries. His parents, Bernadine and Toby Boulet offered to donate his organs so that six lives could live on. They did so because Logan told his parents he was registering as an organ donor and that he was inspired by his c... It is Green Shirt day in honour of the gift of life given by Humboldt Broncos Logan Boulet. Share green today and encourage your world to register at beadonor.ca.
#HumboldtStrong
Humboldt Broncos families to quietly mark anniversary of Saskatchewan bus crash
globalnews.ca
The second anniversary will be a quiet one for the still-mourning families as the COVID-19 crisis holds the country in its grip. www.ontario.ca
Learn about funding that families can apply for if they have children who are not in school or child care because of coronavirus (COVID-19). Find out if you are eligible and how to apply. I'm sure we can all use some help coping. Join CALD and AIHA in this free webinar brought to the autoimmune liver disease community.š¾ššššæ-ššµ šš§š¤š£š©š”šš£š ššš„š¤š§š©: š¾š¤š„šš£š š¬šš©š š©šš š¾š§ššØššØ
ššæš²š² šŖš²šÆš¶š»š®šæ
š± š½.šŗ. šš¦š§, š š¼š»š±š®š, šš½šæš¶š¹ ššÆ š¼š» ššµš² šššš¼š¶šŗšŗšš»š² šš²š½š®šš¶šš¶š šššš¼š°š¶š®šš¶š¼š»āš šš®š°š²šÆš¼š¼šø š½š®š“š²
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The second webinar in our series, titled šš³š°šÆšµššŖšÆš¦ šš¦š±š°š³šµ: šš°š±šŖšÆšØ šøšŖšµš© šµš©š¦ šš³šŖš“šŖš“, will feature two psychologists who will provide both adult and pediatric patients and families with tips to handle these stressful times. Weāll also give a brief update on new developments in the pandemic and the latest news that autoimmune liver disease patients need to know.
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What are you struggling with most during these times of social distancing and stay-at-home orders as a patient, parent, or even a caregiver? How can we help? š£š¹š²š®šš² šššÆšŗš¶š šš¼ššæ š¾šš²ššš¶š¼š»š š³š¼šæ š¼ššæ š“šš²šš š½ššš°šµš¼š¹š¼š“š¶ššš š®š»š± š¶š»š³š²š°šš¶š¼šš š±š¶šš²š®šš² š²š
š½š²šæš šÆš š²šŗš®š¶š¹š¶š»š“ š¶š»š³š¼@š®š¶šµš²š½.š¼šæš“ šÆš š± š½.šŗ. š§šµššæšš±š®š, šš½šæš¶š¹ šµ.
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The Autoimmune Hepatitis Association (AIHA) is hosting this free bi-weekly webinar series called šš¶šµš°šŖš®š®š¶šÆš¦ ššŖš·š¦š³ ššŖš“š¦š¢š“š¦ š¢šÆš„ šµš©š¦ ššššš-19 šš¢šÆš„š¦š®šŖš¤: šš³š°šÆšµššŖšÆš¦ šš¦š±š°š³šµ in partnership with the Center for Autoimmune Liver Disease at Cincinnati Children's Hospital (CALD).
For the artists in our community: an interesting opportunity to have your art seen. We've seem some amazing visual expressions of PSC. Deadline is April 1 for submissions.
From #CripRitual:
"The Critical Design Lab, in collaboration with Tangled Art+Disability and the Doris McCarthy Gallery, invites disabled, crip, d/Deaf, Mad, and Sick artists to submit works on/about #CripRitual: Disabled, crip, d/Deaf, Mad, and Sick people face a lot of barriers and stigma. One way to deal with these barriers is through rituals. Rituals can be things that we do to create accessibility, mark important moments, or to be in community with others who have similar experiences. What kind of rituals do you have in your life that help to deal with barriers and stigma? How do they make life better? How do they bring you together with your community? "
More info here cripritual.com/open-call-for-artists/
cripritual.com
Information The Critical Design Lab, in collaboration with Tangled Art+Disability and the Doris McCarthy Gallery, invites disabled, crip, d/Deaf, Mad, and Sick artists to submit works on/about #Cri... A very difficult reality.
Viable organs from deceased donors go unused as Ontario hospitals pause some transplants | CBC News
ow.ly
Some viable organs have not been recovered from deceased donors in Ontario in the wake of the COVID-19 pandemic, as hospitals in the province temporarily scale back procedures that aren't deemed essential, according to a leading transplant specialist in Toronto. Looking for answers about $ in this time? Federal and provincial resources here. Thanks Professor Jennifer Robson, Carleton, for compiling and updating.
Financial support, sick leave, caregiver, unemployment + other info about benefits
drive.google.com/file/d/1lOJn7XS6ETIkbLRodYk681M_2dxkkQsc/view
Ped PSC and AIH resources from our friends and trusted sources! thank you CALD and AIHA!Weāre excited to announce the Autoimmune Hepatitis Association (AIHA) will host a free bi-weekly webinar series called Autoimmune Liver Disease and the COVID-19 Pandemic: Frontline Report.
In partnership with the Center for Autoimmune Liver Disease at Cincinnati Children's Hospital, weāll summarize the latest COVID-19 research and provide the most important information for patients and their families.
Our first webinar, Immunosuppression and COVID-19: Is there risk?, will be at 5 p.m. EST this coming Monday, March 30 and can be accessed using Zoom at the following link: iu.zoom.us/j/997117272. We encourage you to submit questions in advance by emailing info@aihep.org by noon on Sunday.
The webinar will give an overview of the pandemic, dig into the risks for adult and pediatric autoimmune liver disease patients, share more about the impact of taking immunosuppressants during infectious disease outbreaks, and field questions from our members.
Guest presenters include:
Aaron Ermel, M.D., Assistant Professor of Medicine at Indiana University School of Medicine: infectious diseases.
Alexander Miethke, M.D., Associate Professor of Medicine at University of Cincinnati: pediatric hepatology and liver transplant.
Marwan Ghabril, M.D., Professor of Medicine at Indiana University School of Medicine: adult hepatology and liver transplant.
AIHA Executive Director Craig Lammert, M.D., a hepatologist at Indiana University School of Medicine, and Erin Anderson, Director of Programs and Advancement for the AIHA, will moderate the session.
Weāll hope youāll consider joining us by Zoom: iu.zoom.us/j/997117272. Participants in the U.S. can also access the webinar by phone. Dial 1-312-626-6799 (meeting ID number is 997 117 272).
PSC Connect Day! We all need extra connection in these challenging times.
Please join PSC Partners Canada for a PSC Connect Virtual Canada Meetup at PSC Partners Canada zoom room.
Today 6pm EST.
Complete this form to receive an emailed zoom room invitation. forms.gle/fUCCZSPsZ5R6UUFq6#PSCPartners2020 PSC Partners Seeking a Cure Canada
It is PSC Connect day! And we all need extra connection in these challenging times. Please join PSC Partners Canada for a PSC Connect Virtual Meetup at PSC Partners Canada zoom room. Today 6pm EST.
Complete this form to receive an emailed zoom room invitation. forms.gle/fUCCZSPsZ5R6UUFq6
PSC Connect Virtual Canada Meetup
forms.gle
Please add your information to receive an invitation to the PSC Connect Virtual Meetup In case you missed it, the March edition of the Loon Duct went out last week. You can find it on the PSC Partners Canada site
pscpartners.ca/index.php/newsletters/
Great advice from one of Canadaās experts on isolation. āHappy Landings!ā
An Astronaut's Guide to Self Isolation
www.youtube.com
Chris provides four useful steps to productive self-isolation More Canadian resources about COVID-19: a webinar about COVID-19 AND IBD, from Crohn's and Colitis Canada. French subtitles will be available shortly.
bit.ly/3a0C20B.
If you missed yesterday's webinar, we've got you covered. Grab a cup of coffee or tea, prop your feet up, and listen to three medial experts discuss PSC/IBD and COVID-19 (coronavirus).
youtu.be/UMjy2N49ij4If you missed the March 17 webinar, we've got you covered. Grab a cup of coffee or tea, prop your feet up, and listen to three medial experts discuss PSC/IBD and COVID-19 (coronavirus).
youtu.be/UMjy2N49ij4
Please take this seriously. Having friends over for coffee is not social distancing. Your actions will make a difference.
"However de Villa said that at the moment we are at the point in the infection curve where we should expect to see a steep increase.
āWe are just at the beginning of that increase, not only here in Toronto but in Canada,ā she said. āWhat comes after the curve depends on us.ā
www.cp24.com/news/having-friends-over-for-coffee-is-not-social-distancing-toronto-s-top-doctor-1....
Having friends over for coffee is not social distancing: Toronto's top doctor
www.cp24.com
Toronto's chief medical officer of health called on residents Wednesday to go the extra step to practice social distancing as much as possible, saying that Toronto is at a critical juncture where we should anticipate a steep rise in cases. If you missed the March 17 webinar, we've got you covered. Grab a cup of coffee or tea, prop your feet up, and listen to three medial experts discuss PSC/IBD and COVID-19 (coronavirus).
youtu.be/UMjy2N49ij4
JOIN US!
PSC/IBD & COVID-19 (coronavirus):
WHAT YOU WANT TO KNOW
Free Webinar with Three Medical Experts
Join us this Thursday, March 19, 7 p.m. EST, for an interactive webinar discussing the COVID-19 pandemic as it relates to primary sclerosing cholangitis (PSC).
PSC Partners is offering this event free-of-charge.
The three experts answering questions and providing advice are:
Dr. Gideon Hirschfield, Hepatologist, Toronto General Hospital
Dr. Josh Korzenik, Gastroenterologist, Brigham and Women's Hospital
Dr. Jerome Schofferman, Retired Internist and Post-Transplant PSC Patient
Use the information below to join the webinar.
Please click the link below to join via computer:
zoom.us/j/181609187
Webinar ID: 181 609 187
To call via phone in the U.S., dial US: +1-346-248-7799
To call via phone in Canada, dial 1-778-907-2071
For other international phone numbers, click here:
zoom.us/u/acHYQOceA9
BE SURE TO JOIN A FEW MINUTES EARLY, SO YOU ARE ABLE TO GO THROUGH THE NECESSARY STEPS TO JOIN THE WEBINAR.
Click here for Zoom instructions, if you need help.
Please send questions in advance to: contactus@pscpartners.org.
Questions must be received by Wed., March 18, at 10 p.m. ESTPSC/IBD & COVID-19 (coronavirus):
WHAT YOU WANT TO KNOW
Free Webinar with Three Medical Experts
Click here for information on our website: pscpartners.org/psc-and-covid-19/
Join us this Thursday, March 19, 7 p.m. EST, for an interactive webinar discussing the COVID-19 pandemic as it relates to primary sclerosing cholangitis (PSC) and Irritable Bowel Syndrome (IBD).
PSC Partners is offering this event free-of-charge. (If you can't join in person, this session will be recorded and posted on our website.)
The three experts answering questions and providing advice are:
Dr. Gideon Hirschfield, Hepatologist, Toronto General Hospital
Dr. Josh Korzenik, Gastroenterologist, Brigham and Women's Hospital
Dr. Jerome Schofferman, Retired Internist and Post-Transplant PSC Patient
Use the information below to join the webinar.
Please click the link below to join via computer:
zoom.us/j/181609187
Webinar ID: 181 609 187
To call via phone in the U.S., dial US: +1-346-248-7799
To call via phone in Canada, dial 1-778-907-2071
For other international phone numbers, click here:
zoom.us/u/acHYQOceA9
BE SURE TO JOIN A FEW MINUTES EARLY, SO YOU ARE ABLE TO GO THROUGH THE NECESSARY STEPS TO JOIN THE WEBINAR.
Click here for Zoom instructions, if you need help.
Please send questions in advance to: contactus@pscpartners.org.
Questions must be received by Wed., March 18, at 10 p.m. EST PSC Partners Seeking a Cure Canada
Advice about getting serious now about voluntary social distancing in Canada.
... We need to, in the immortal, if clichĆ©d, words of hockey great Wayne Gretzky, āSkate to where the puck is going, not where it has been.ā...
www.theglobeandmail.com/canada/article-coronavirus-pandemic-canada-needs-get-serious-about-social...
Shut it down: Itās time for Canada to get serious about social distancing
www.theglobeandmail.com
We have to face the reality that we can no longer stop this pandemic illness, just slow it down One of the core beliefs of this program is the power of collaboration. PSC Partners Canada is working jointly with PSC Partners to make the most of this opportunity from CZI for the PSC community everywhere.
So excited to have Priscilla Chan welcome us to the first Rare as One gathering. It may have been switched to a virtual gathering, but her message from an MD's perspective about learning from patients about rare disease is powerful!
#RareasOne
@cziscience
#PSCPartners #PSC
Timeline PhotosHow does gender influence the transplant experience? For our March Lunch & Learn, @MamathaBhat3 discusses her research on Gender Disparities in Liver Transplantation & Living Organ Donation. Register ā”ļøhttp://ow.ly/IRBE50yF4Yu
#genderequity #healthcare @UHNwomen
AND NOW FOR A BIT OF GOOD NEWS...
Please mark your calendars for the 2021 PSC Partners Annual Conference, June 11-13, 2021, Boston, MA. We are excited to collaborate with Dr. Josh Korzenik, Brigham and Womenās Hospital, and Dr. Dan Pratt, Massachusetts General Hospital, for this event. The conference hotel is the Boston Marriott Burlington, Burlington, MA, just 19 miles from Bostonās Logan Airport.
More info. will be available soon. To ensure you're up to date on this conference and other PSC Partners news, join our email list. conta.cc/2W14oUf
SEE YOU IN BOSTON IN 2021!
#PSCPartners2021 #PSC Brigham and Women's Hospital massgeneral_ #LiverDisease
This clinical trial for adult PSC patients is also recruiting in Canada! Alberta and Ontario. Visit the High Tide site at www.pscclinicaltrials.com/ for more specifics. Canadian site contacts are below in the comments, and can be found on clinicaltrials.gov/ct2/show/NCT03333928.
Talk to your doctor to see if this is for you!Check out this clinical trial that is being conducted in 22 centers for PSC. The clinical trial website has details on how to contact them.
"HTD1801, berberine ursodeoxycholate, is an oral investigational drug developed by HighTide to treat Primary Sclerosing Cholangitis. The Food and Drug Administration (FDA) granted HighTide āFast Trackā designation for HTD1801 in the treatment of PSC, in recognition that HTD1801 has the potential to address an unmet medical need based on data shared with the FDA. To our knowledge, HTD1801 is the only drug to receive fast track designation for PSC."
www.pscclinicaltrials.com/index/index/htd.html
Charitable Donations and Canadian Income Taxesby Tom Wright, CPA CA
The Loon Duct and Partners Seeking a Cure Canada do not claim to provide income tax advice to our readers, but there are some basics that you should consider, and perhaps review with your tax adviser.
Canadians donate to charities to assist them in their good works. Canadian income tax rules help us to give that assistance by allowing tax credits based on the size of our donations. These credits help us to reduce the net cash cost of a donation.
How Donations to Registered Charities Affect your Income Taxes
Donations provide tax credits, not subtractions from taxable income. Pretty democratic: your tax reduction is based solely on the size of your donation, not your income. Donors in all income tax brackets get about the same credits for their donations.
First time donor?ā If you have never donated before, you are entitled to the super credit! Your tax bill will be reduced by 40% of your donation up to $200 and 54% of up to the next $800. Your total tax reduction would be over $500 on a donation of $1,000. A great way to start a great practice.
Repeat donor?ā Donations totaling up to $250 will provide income tax reductions of about 20% in most provinces. Tax reduction on the amount of your donation over $250 will be from 45% to 50%, again depending on your province of residence.
A tip:ā Are you and your domestic partner both making charitable contributions? Consider claiming both sets of donations on one partner’s tax return: you’ll get to the $250 threshold quicker and move into the higher credit bracket sooner.
Here’s a big one: āAre you estate planning, and want to benefit a charity or charities in your lifetime to see the benefits of your donations? Considering donating “appreciated securities”. “Securities” in this context generally means shares in a company, bonds or mutual funds listed on a recognized stock exchange. “Appreciated” means securities worth more than their “adjusted cost base”, which is basically what you paid for them plus any reinvested dividends. If you sell those securities to generate cash for a donation, you will pay income tax up to 27% on the appreciation and therefore have less money left over to donate.
However, if you give those appreciated securities directly to charity, there is no income tax on the appreciation and you will receive a donation receipt for the full value of the securities. Remember our note above? Your tax bill will be reduced by 45-50% of the donation receipt. So you will have more cash to help fulfill your other estate planning priorities.
PSC Partners Canada works with the chimp:Charitable Impact Foundation to accept such donations directly. If you or a loved one wish to make such a donation, contact us at ācontactus@pscpartners.ca and we can help you with the mechanics.
To Claim your Credit: Keep your tax receipts from donations to registered charities! If you donate to PSC Partners Canada directly (by writing a cheque payable to PSC Partners Seeking a Cure Canada) we will send you a receipt. If you donate online, your tax receipt will come from our partner, chimp:Charitable Impact Foundation.
PSC Partners Seeking a Cure Canada, 3 - 585 Dundas Street East, Toronto, M5A 2B7
www.harriskuipers.com
āFuck you. Iām not dead yet,ā reads the sticky note on author Laura Bradburyās computer screen. Courageous, honest, resilient, sharp-witted and super bad-ass doesnāt even cut it. Laura approaches every inch of her life with an honesty and zest that is exhilarating to witness. Here she shar... PSC Partners is hosting a Patient Focused Drug Development (PFDD) meeting on Fri., Oct. 23, 2020, in Wash., D.C., area. Mark your calendars. Everyone encouraged to attend.
Additionally, we will be putting together one pediatric (either older kids or a parent) and two adult panels. Interested? Please send one-page story (approx. 500 words or less) to contactus@pscpartners.org.
Whether you're selected or not, we hope you'll come. Numbers matter, and there will be lots of opportunity to share. Questions? contactus@pscpartners.org.
Oh my goodness, I so want to throw this woman a party when she's healed! www.journalpioneer.com/news/local/pei-woman-heads-to-toronto-to-donate-part-of-her-liver-to-a-str...
P.E.I. woman heads to Toronto to donate part of her liver to a stranger | The Journal Pioneer
www.journalpioneer.com
Trina Doyle considers herself a very healthy person, but soon she will pack her bags for major surgery next week in Toronto. At the top of her packing-list are surgical gloves and face masks to protect herself from infections while she HighTide Therapeutics is currently recruiting PSC patients for this trial in Alberta and Ontario. Contacts in the comments.HighTide Therapeutics is still recruiting PSCers for their Phase 2 trial. Interested patients can contact HighTide at clinical.trials@hightidetx.com and their team will respond to help patients connect with the nearest investigator.To find out details about the trial, check out clinicaltrials.gov/ct2/show/NCT03333928?term=HTD-1801&draw=2&rank=4
Live & work with PSC? Check out this study to support development of a tool to facilitate discussion & problem-solving between employees with episodic disabilities & their employers. bit.ly/3btLsTc
Honorarium offered!
How to get involved | ACED - Accommodating and Communicating about Episodic Disability
bit.ly
The success of the ACED project depends on input from workplace stakeholders and employees with episodic disabilities, the main audiences for the tools and resources being developed by the project. We need your input! Join the JDAPT pilot test The ACED research team is currently seeking participants... Happy Valentine's Day!
Valentineās Day is a great day to focus on charity, generosity, and love of others! There are things you can do to create an impact in the name of love this Valentine's, including:
ā¤ļø Rally loved ones around a cause
š Send charitable dollars as sweet valentines
š Treat yourself
This is a perfect day to set up a recurring donation to PSC Partners or PSC Partners Canada to demonstrate your ongoing support of those affected by PSC. And to support the ultimate gift: TO FIND A CURE!
Visit this link to make your Valentine's donation:
my.charitableimpact.com/campaigns/psc-partners-canada-ongoing-campaign
Tune in tomorrow, Tuesday, if you have interest in how Canadian federal price controls may affect those with rare diseases, and those who need access to newly developed drugs. Live streamed starting at 12:20pm Tues Feb 4.Millions of Canadian lives are at stake as new federal medicine price controls are set to kick in. To learn more, join @durhane @tomclarkGPA @macleodscanada @DrYvesBolduc and Prof Tania Stafinski at #fightforourlives ECC panel tomorrow (Feb4): bit.ly/FightForOurLivesCanada - live streamed starting 12:20pm @ bit.ly/TheFightForOurLives #cdnpoli #PMPRB
Great news!Exciting news! We're overjoyed to announce that we applied for and were accepted to be part of the Chan Zuckerberg Initiativeās #RareAsOne Network ā a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. www.RareAsOne.org
More details to come, but, for now, say it with us...Woo Hoo!
#PSC2020 #RareDisease #PSC #PSCPartners
Today!Grab your lunch and join us for a panel presentation and discussion on Health Equity, Living Donation & Transplantation!
You're be able to submit discussion questions via Facebook Live, or just sit back and listen to the conversation. See you at 12:15!
Speakers
1. Sonali Pendharkar, Transplant Social Work: Patient Pathway (access to health services)
2. Margot Mitchell, Transplant Social Work: Income, Employment, Social Support
3. Sinthu Srikanthan, Social Work: Language, Culture, Health Literacy
4. Mridula Sury, Listed Liver Coordinator for Transplant Recipients: Patient "Non Complianceā
UHN Transplant Centre
Public appeal for a liver donor for a PSCer in Ontario. Please share.
"Jeff Hall, my husband, is about to be added to the transplant list in Toronto and needs a living liver donor. Blood type O+ or O-. A living donor can give a piece of their liver and save his life. It grows back!"
Visit liver2savejeff.com.
Meet the Canadian research team that is turning their focus to PSC!
magazine.utoronto.ca/research-ideas/health/mapping-the-human-body-one-cell-at-a-time-liver-map-ga...
Mapping the Human Body, One Cell at a Time - University of Toronto Magazine
magazine.utoronto.ca
U of T scientists have created a cell-by-cell map of the human liver that could increase the success of transplant surgery and lead to new treatments for liver disease Canadian PSCer in the news. A public appeal for a donor in Calgary. globalnews.ca/news/6446224/calgary-man-liver-donation-plea/
Calgary man makes public plea for liver donation as health deteriorates
globalnews.ca
"This is much bigger than me. There are thousands of people across Canada that are waiting for organs and many of them won't get them." Big news! More details in the next Loon Duct!Congrats to the new human immunology research team from University Health Network, SickKids Foundation and University of Toronto and the amazing PSC Partners Seeking a Cure Canada for the Canadian Institutes of Health Research funded study to better understand the immunology of PSC.
Toronto General & Western Hospital Foundation
Care to share your photos? Deadline is tomorrow, Thursday!
Do you have a photo that tells your story of living with a #raredisease? Submit a photo for the EURORDIS Photo Award by 16 January!
Entries open to all nationalities, ages and rare diseases. #EURORDISAwards2020
blackpearl.eurordis.org/photo-award/
blackpearl.eurordis.org
Open to anyone with an interest in rare diseases. You have until 16 January 2020 to send your favourite, most original, or artistic photo(s)
- Toronto, Ontario
- (647) 848-6953
- contactus@pscpartners.ca
