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
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 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
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! ⭐️
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 💻.
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/
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.
𝘾𝙊𝙑𝙄𝘿-19 𝙁𝙧𝙤𝙣𝙩𝙡𝙞𝙣𝙚 𝙍𝙚𝙥𝙤𝙧𝙩: 𝘿𝙤𝙘𝙩𝙤𝙧𝙨 𝙞𝙣 𝙖 𝙃𝙤𝙩 𝙕𝙤𝙣𝙚
𝙁𝙧𝙚𝙚 𝙒𝙚𝙗𝙞𝙣𝙖𝙧
5 𝙥.𝙢. 𝙀𝙎𝙏, 𝙈𝙤𝙣𝙙𝙖𝙮, 𝘼𝙥𝙧𝙞𝙡 27 𝙇𝙄𝙑𝙀 𝙤𝙣 𝙩𝙝𝙚 𝘼𝙪𝙩𝙤𝙞𝙢𝙢𝙪𝙣𝙚 𝙃𝙚𝙥𝙖𝙩𝙞𝙩𝙞𝙨 𝘼𝙨𝙨𝙤𝙘𝙞𝙖𝙩𝙞𝙤𝙣’𝙨 𝙁𝙖𝙘𝙚𝙗𝙤𝙤𝙠 𝙥𝙖𝙜𝙚
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The third webinar in our series, titled 𝘍𝘳𝘰𝘯𝘵𝘭𝘪𝘯𝘦 𝘙𝘦𝘱𝘰𝘳𝘵: 𝘋𝘰𝘤𝘵𝘰𝘳𝘴 𝘪𝘯 𝘢 𝘏𝘰𝘵 𝘡𝘰𝘯𝘦, 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.
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What questions do you have for our presenters? Email info@aihep.org by 9 a.m. Friday, April 24 with topics you’d like to have covered.
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The Autoimmune Hepatitis Association (AIHA) is hosting this 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(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 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
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
… 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 it’s now gone
You’ve 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 We’re living in an unprecedented moment in history, and it’s been amazing to see how people are pulling together to support one another. Here at TouchWood we’ve decided to ask our authors what has been keeping them busy during a time when we’ve 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.𝘾𝙊𝙑𝙄𝘿-𝟭𝟵 𝙁𝙧𝙤𝙣𝙩𝙡𝙞𝙣𝙚 𝙍𝙚𝙥𝙤𝙧𝙩: 𝘾𝙤𝙥𝙞𝙣𝙜 𝙬𝙞𝙩𝙝 𝙩𝙝𝙚 𝘾𝙧𝙞𝙨𝙞𝙨
𝗙𝗿𝗲𝗲 𝗪𝗲𝗯𝗶𝗻𝗮𝗿
𝟱 𝗽.𝗺. 𝗘𝗦𝗧, 𝗠𝗼𝗻𝗱𝗮𝘆, 𝗔𝗽𝗿𝗶𝗹 𝟭𝟯 𝗼𝗻 𝘁𝗵𝗲 𝗔𝘂𝘁𝗼𝗶𝗺𝗺𝘂𝗻𝗲 𝗛𝗲𝗽𝗮𝘁𝗶𝘁𝗶𝘀 𝗔𝘀𝘀𝗼𝗰𝗶𝗮𝘁𝗶𝗼𝗻’𝘀 𝗙𝗮𝗰𝗲𝗯𝗼𝗼𝗸 𝗽𝗮𝗴𝗲
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The second webinar in our series, titled 𝘍𝘳𝘰𝘯𝘵𝘭𝘪𝘯𝘦 𝘙𝘦𝘱𝘰𝘳𝘵: 𝘊𝘰𝘱𝘪𝘯𝘨 𝘸𝘪𝘵𝘩 𝘵𝘩𝘦 𝘊𝘳𝘪𝘴𝘪𝘴, will feature two psychologists who will provide both adult and pediatric patients and families with tips to handle these stressful times. We’ll 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? 𝗣𝗹𝗲𝗮𝘀𝗲 𝘀𝘂𝗯𝗺𝗶𝘁 𝘆𝗼𝘂𝗿 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 𝗳𝗼𝗿 𝗼𝘂𝗿 𝗴𝘂𝗲𝘀𝘁 𝗽𝘀𝘆𝗰𝗵𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀 𝗮𝗻𝗱 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝘂𝘀 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗲𝘅𝗽𝗲𝗿𝘁 𝗯𝘆 𝗲𝗺𝗮𝗶𝗹𝗶𝗻𝗴 𝗶𝗻𝗳𝗼@𝗮𝗶𝗵𝗲𝗽.𝗼𝗿𝗴 𝗯𝘆 𝟱 𝗽.𝗺. 𝗧𝗵𝘂𝗿𝘀𝗱𝗮𝘆, 𝗔𝗽𝗿𝗶𝗹 𝟵.
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The Autoimmune Hepatitis Association (AIHA) is hosting this 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 (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!We’re 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, we’ll 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.
We’ll hope you’ll 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 Canada’s experts on isolation. “Happy Landings!”
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.
“We are just at the beginning of that increase, not only here in Toronto but in Canada,” she said. “What comes after the curve depends on us.”
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 clichéd, words of hockey great Wayne Gretzky, “Skate to where the puck is going, not where it has been.”...
www.theglobeandmail.com/canada/article-coronavirus-pandemic-canada-needs-get-serious-about-social...
Shut it down: It’s 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 ➡️http://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 Women’s 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 Boston’s 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 “Fast Track” 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? 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? 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: 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: Are 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 contactus@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
“Fuck you. I’m not dead yet,” reads the sticky note on author Laura Bradbury’s computer screen. Courageous, honest, resilient, sharp-witted and super bad-ass doesn’t 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!
Valentine’s 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:
❤️ Rally loved ones around a cause
💛 Send charitable dollars as sweet valentines
💚 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 Initiative’s #RareAsOne Network — 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 Compliance”
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) N.B. increases living allowance for transplant patients leaving N.B. | Watch News Videos Online
globalnews.ca
Watch N.B. increases living allowance for transplant patients leaving N.B. Video Online, on GlobalNews.ca Good news for organ donation rates in Canada!
'Yahoo!': Calgary MP's organ donor bill gets second life in new year | CBC News
ow.ly
Conservative Len Webber thought he'd spend his winter lobbying fellow MPs for help with reviving a private member's bill that nearly became law in the last Parliament. Instead, luck (or maybe more than luck) smiled on him, and now he's guaranteed debate time for his organ donation bill this February... Caroline V. speaks from a place of lived experience and analysis of the data and the organ donation system. Thank you Caro for keeping the spotlight on this issue!
And, we all need to talk to our families and be clear on each other’s wishes about organ donation.
ottawacitizen.com/opinion/letters/todays-letters-increasing-organ-donation-rates-in-canada-starts...
Today's letters: Increasing organ donation rates in Canada starts with you
ottawacitizen.com
We can do far more with organ donationRe: Calgary MP wants to use tax form to boost organ donation, Dec. 22I applaud MP Len Webber’s efforts to re-introduce his private member’s bill es... Canadians! This is a worldwide PSC patient registry. If you haven't already, check it out!Hey, PSCers, if you're searching for a New Year's resolution, we've got a nifty one that will only take you about 30 minutes to complete.
Join the PSC Partners registry. Your data will help in the search for treatments and a cure for primary sclerosing cholangitis (PSC). Thanks a million, and happy new year!
pscpartners.org/patient-registry/
Kelly Bryan told us that she was inspired to volunteer to be a liver donor because of a public appeal for a donor that she saw from a Canadian PSCer.
Chopped Liver Club - thank you!
www.theglobeandmail.com
Are they crazy? "We get asked that all the time, variations on: ‘Why would you do this?’” Ms. Badenoch says. “But there’s an emotional joy to saving a life that can’t be described in words.” 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? 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? 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: 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: Are 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 contactus@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
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? 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? 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: 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: Are 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 contactus@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
Whoa. www.theglobeandmail.com/business/article-lifelabs-pays-ransom-after-massive-data-breach-affecting...
LifeLabs pays ransom after massive data breach affecting up to 15 million Canadians
www.theglobeandmail.com
The personal information stolen from the lab test provider could include a customer’s name, address, e-mail, login, passwords, date of birth and health card number, all of which were on the computer systems the hackers accessed On the fourth day of Christmas...
Please consider a donation to PSC Partners Canada to enable researchers to find a cure and to make the year-end challenge matching grant of $30,000! pscpartners.ca/35-2/ to see ways to donate!
From our hilarious Canadian friend/author/PSC and transplant advocate, Laura Bradbury:
The Twelve Days of Christmas for PSCers
1. Subscription to Disney + (can anyone say Star Wars Marathon, plus who can feel bad when Baby Yoda is on the screen?)
2. Red or Camouflage bed-sheets for when the night itching gets bad
3. A journal so you can write about your worries, but especially your hopes and dreams
4. A donation to PSC Partners Canada to enable researchers to find a cure and to make the year-end challenge matching grant of $30,000! my.charitableimpact.com/campaigns/psc-partners-
canada-year-end-campaign
5. An afternoon laughing so hard with old friends that your stomach hurts, in a good way
6. A massive electric heating pad (life saver for All The PSC Aches)
7. A sugar cookie, because living with PSC can be hard and we deserve a treat
8. An indulgent bath complete with Epsom Salts, candles, and a lock on the door
9. Books on Hygge – the Scandinavian “cozy culture” – perfect for “spoonies”
10. A large, beautiful mug for coffee (good for your liver!), tea, but hopefully not Lactulose (save your ugliest plastic glasses for that)
11. An appreciation of the ridiculous and a twisted sense of humor for certain medical situations (i.e. colonoscopy prep… “Go-litely” is the biggest misnomer out there)
12. Taking five minutes to sign up for the PSC registry to ensure researchers get and stay interested in finding better treatments or indeed a cure for PSC. Just click here: pscpartners.patientcrossroads.org/
Any other ideas?
pscpartners.ca/35-2/
'Who wouldn't do it?' Two kids get second chance thanks to liver donors
calgaryherald.com
On the recent one-year mark of a life-saving surgery, 12-year-old Ica Malabanan sent Kathy Shirley a gift of a watch, to recognize the amount of time Shirley had devoted from her life last fall to ... From our hilarious Canadian friend, author Laura Bradbury, and PSC/transplant advocate:
The Twelve Days of Christmas for PSCers
1. Subscription to Disney + (can anyone say Star Wars Marathon, plus who can feel bad when Baby Yoda is on the screen?)
2. Red or Camouflage bed-sheets for when the night itching gets bad
3. A journal so you can write about your worries, but especially your hopes and dreams
4. A donation to PSC Partners Canada to enable researchers to find a cure and to make the year-end challenge matching grant of $30,000! my.charitableimpact.com/campaigns/psc-partners-
canada-year-end-campaign
5. An afternoon laughing so hard with old friends that your stomach hurts, in a good way
6. A massive electric heating pad (life saver for All The PSC Aches)
7. A sugar cookie, because living with PSC can be hard and we deserve a treat
8. An indulgent bath complete with Epsom Salts, candles, and a lock on the door
9. Books on Hygge – the Scandinavian “cozy culture” – perfect for “spoonies”
10. A large, beautiful mug for coffee (good for your liver!), tea, but hopefully not Lactulose (save your ugliest plastic glasses for that)
11. An appreciation of the ridiculous and a twisted sense of humor for certain medical situations (i.e. colonoscopy prep… “Go-litely” is the biggest misnomer out there)
12. Taking five minutes to sign up for the PSC registry to ensure researchers get and stay interested in finding better treatments or indeed a cure for PSC. Just click here: pscpartners.patientcrossroads.org/
Any other ideas?
my.charitableimpact.com/campaigns/psc-partners-
canada-year-end-campaign
Holiday shopping on amazon.ca? Use this link to start your search and a % of your purchase goes to PSC Partners Canada. Thanks!
pscpartners.ca/amazon-affiliate/
Amazon Affiliate - PSC Partners Canada
pscpartners.ca
We are an Amazon.ca affiliate. Purchases made by using this search will generate a % for PSC Partners Seeking a Cure Canada. Please type your search directly into the search bar and click through to amazon.ca. And thanks for generating funds for PSC research! The referral will expire after 24 hours,... Statistics reported from the Canadian Organ Replacement Register (a pan-Canadian information system for organ failure in Canada).
From Canadian Institute for Health Information "Use the data tables and figures that are part of these annual statistics enable us to examine organ transplantation and donation characteristics, trends and patient outcomes in Canada between 2009 and 2018."
www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2019?utm_medium=social-organic&...
Organ replacement in Canada: CORR annual statistics, 2019 | CIHI
www.cihi.ca
Take a closer look at statistics on dialysis, organ transplantation and donation characteristics, trends and patient outcomes in Canada between 2009 and 2018. There are two clinical trials for PSC patients recruiting or soon-to-be recruiting in Canada! More info at www.pscpartners.ca/clinical-trials. Speak to your doctor if you are interested in finding out if your are eligible.
If you would like to receive direct notice to your email inbox of clinical trials for which you may be eligible, please consider joining the PSC Partners Patient Registry www.pscpartnersregistry.org
Here is the open letter from Steve Ludzik's wife about their public appeal for a donor. Please share widely.
More PSC in the news. Former NHL player from Niagara Falls seeking liver donor.
Parkinson’s crusader Steve Ludzik fighting another battle
www.niagarathisweek.com
Former NHLer in urgent need of liver transplant. Giving Tuesday is tomorrow! Dubbed “Opening day of the giving season”, it’s a time where charities, companies and individuals join together and rally for favourite causes. In the same way that retailers take part in Black Friday, the giving community has come together for GivingTuesday.
Our year-end season has been issued a matching challenge grant! Gifts to PSC Partners Seeking a Cure Canada by 3/31/2019 will be matched, up to $30,000!
Please consider donating here: my.charitableimpact.com/campaigns/psc-partners-canada-year-end-campaign
And if you'd like to kick off your own campaign this year, visit www.pscpartners.ca/fundraising for a toolkit to help!
Canada PSC people - the 2nd issue of the Loon Duct is about to go out. Please join the Canada mailing list here! Good information coming about how to help us meet our year-end fundraising goal! We'll need all the help we can get to make the matching grant challenge!
vr2.verticalresponse.com/s/websitesignupform18691697673980
On September 29th PSC Partners Canada hosted a Meetup in Toronto, Ontario. Attendees from all over Ontario were joined by guest speakers Dr. Gideon Hirschfield, from the Toronto Centre for Liver Disease at Toronto General Hospital and Dr. Sonya MacParland, UHN Researcher. Albert Fung from the Toronto Video Atlas of Surgery also attended and provided attendees with a rare opportunity to take part in a virtual liver experience. The meetup was a great success with help from our many volunteers and our sponsors: CymaBay Theraputics, Turtledove Bakery, Passion for Desserts and the Centre for Social Innovation.
We are trying something new for this year's end-of-year fundraising push. If you are shopping, please consider using the PSC Partners Canada amazon.ca affiliate link to generate up to 10% of your shopping for PSC Partners Canada.
Visit pscpartners.ca/amazon-affiliate/ to get started!
More PSC trial news in Canada!
Congratulations to our very own Caroline V. for recognition of excellence in her work on development and management of a learning program for pharmaceutical and medical devices evaluators at Health Canada.
Awards for Regulatory Excellence | TOPRA
www.regulatoryaffairsawards.org
Awards for Regulatory Excellence run by TOPRA, The Organisation for Professionals in Regulatory Affairs We are very pleased to be representing PSC patients this weekend at the CASL autoimmune liver disease meeting in Ottawa.
There are a lot of very smart people working on PSC gathered together in this room. A source of great hope!
The future of transplant science from TO! Tomorrow livestream...Join the live stream! Behind the Scenes:
November 19, 2019 | 2 p.m. – 3 p.m.
You’re invited to join the live stream for our Behind the Scenes event:
The future of transplant science: pushing the boundaries of medicine to help more people LIVE ON.
You’ll hear from world-leading scientists at the UHN Transplant Program.
RSVP now → tgwhf.ca/livestream
A message from PSC Partners registry coordinator: A request for those of you who have accounts in our patient registry system--if you have changed your email address since you registered, please update it in your registry account. 41 people did not receive a clinical trial email announcement a while back because your email address was invalid. Your announcement is in the registry's junk mail folder as a bounceback. 😞 Thank you for keeping ALL of your patient registry info up-to-date! If you haven't joined the registry, please do! You can read more about it at [pscpartners.patientcrossroads.org/](pscpartners.patientcrossroads.org/)
pscpartners.patientcrossroads.org
PSC Partners Seeking a Cure is a 501(c)3 non-profit foundation that was created in 2005. The mission of PSC Partners is to provide education and support to PSC patients, families and caregivers and to raise funds to research causes, treatments and potential cures for primary sclerosing cholangitis.
- Toronto, Ontario
- (647) 848-6953
- contactus@pscpartners.ca
