|
|
THE DUCT
A Monthly Newsletter for the PSC Community
|
|
|
|
THANK YOU!
Cheers to everyone who has participated in our very first fundraiser & awareness-raiser WALK83.01 for PSC. Whether you have walked, donated, or both, your participation makes a huge difference in our search for treatments and a cure!
Check out the article further down in this newsletter for an update on this FUN fundraiser, including information about how you can still get involved in the last two weeks of this virtual event.
|
|
|
|
Add Your Voice to the Conversation!
Join Us for the Next Webinar in the
2021 ROADMAP Initiative Series
|
|
|
|
During the ROADMAP Research 201 session, four fantastic PSC researchers will present an overview of important PSC research areas. Then we’ll all have an opportunity in breakout rooms to ask questions and share our ideas for important areas to study in our quest for treatments and a cure for PSC.
Speakers:
Immune Cells: Dr. David Assis, Yale School of Medicine
Bile Acids: Dr. Paul Dawson, Emory School of Medicine
Microbiome: Dr. Steven O’Hara, Mayo Clinic
Genetics: Dr. Lewis Roberts, Mayo Clinic
Researcher/Facilitators:
Dr. Heather Francis, Indiana University School of Medicine
Dr. Gideon Hirschfield, University of Toronto
Dr. Josh Korzenik, Brigham and Women’s Hospital
Dr. Cara Mack, Children’s Hospital Colorado
Dr. Kathy Siminovitch, University of Toronto
When you register, you will have the opportunity to request one of five breakout rooms:
Immune Cells, Bile Acids, Microbiome, Genetics, and Research: Back to Basics. We will do our best to place you in the breakout room of your choice.
|
|
|
|
Attention Patients and Caregivers
Prepare for Webinar by Joining
Zoom Chat with Director of Research Strategy
September 23rd, 6 p.m. MT
|
|
|
|
In preparation for the Research 201 Webinar, PSC Partners Director of Research Strategy Dr. Ruth-Anne Pai is hosting an open discussion for patients and caregivers with tips on how to formulate research questions, September 23, 6 p.m., MT.
|
|
|
|
Five Reasons You Should Attend BOTH the
Zoom Chat on Sept. 23rd and the Webinar on Sept. 29th
|
|
|
|
1.We all know it can be intimidating for some folks to talk with researchers, but, as PSC patients and caregivers, we provide valuable information to those searching for treatments and a cure for PSC. During the Zoom Chat, you will learn techniques to develop and ask vital questions and impart important knowledge without fear. Then, during the webinar breakout rooms, you will have the chance to speak directly with researchers and ask your burning questions.
2.Both the Zoom Chat and the Webinar are designed to educate and train our community in preparation for the 2022 PSC Partners Conference. By preparing now, we increase the opportunities for us to maximize our time together with PSC researchers at the Conference, June 2-5, 2022.
3.You have a different perspective than anyone else. Whether you're a PSC patient, post-transplant PSC patient, or caregiver, your PSC experience is unique! During the Zoom Chat, you will learn how to formulate questions based on your personal experience. Then, during the webinar, you can ask the vital questions that only YOU can ask. Every voice makes a difference.
4.Your question may be just the thing to move researchers forward in an unexpected way. By preparing yourself during the Zoom Chat and then attending the webinar, you may have just the right perspective to move the needle, but it can't happen if you don't attend.
5.In sharing our experiences, needs, and questions with each other, clinicians, and the research community, we can identify important research questions to prioritize in scientific research. It can't happen if we don't show up and participate.
While we encourage attendance at both the Zoom Chat and the Webinar, it is not a requirement.
|
|
|
|
Mark calendars for the next ROADMAP Initiative webinars:
Tuesday, October 26, 6-7:30 p.m. MT
ROADMAP Initiative Webinar Research 301
The PSC Research Landscape: Now and Into the Future
Charting a Path Forward
Registration available soon. Watch social media and check EVENTS page for link.
|
|
|
|
There Are Still Two Weeks Left In
WALK83.01 FOR PSC!
Won't you help us reach our goal?
|
|
|
|
For every $30,000 raised during WALK83.01 for PSC, we can fund a full year of a research project! That means, we're close to funding THREE YEARS of research. Won't you help make our beaker overflow? Every $1, $5, $10, $20, $100, (or whatever amount works for you) makes a difference. This event runs through September 30th, so there's just two weeks left to support our first annual FUN fundraiser. Join us!
Together, we are creating a world where a PSC diagnosis comes with a cure!
|
|
|
|
Fecal Microbiota Transplantation
and
Link Between Gut & Liver
A Discussion with Dr. Cyriel Ponsioen
|
|
|
|
In episode 26, Host Niall McKay talks with Dr. Cyriel Ponsioen, senior staff member at the Department of Gastroenterology & Hepatology at the Academic Medical Center (AMC) in Amsterdam, about research being done to determine the benefits of fecal microbiota transplantation in PSC patients with IBD.
"In PSC, there's only very limited data on the effect of (fecal microbiota transplantation)," said Dr. Ponsioen. "We used to think that we should look for the bad bugs, but, nowadays, we're more inclined to think that we should look for the good bugs. If we are able to identify which good bugs you need that are lacking in people with ulcerative colitis or Crohn's disease who also have PSC, then we're on a good track."
During the conversation, McKay and Ponsioen also speak about the impact of antibiotics, bacteriophages, the creation of the International PSC Study Group, and more.
|
|
|
|
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. Topics include patient stories, latest research updates from PSC experts, collaborations that are necessary to find better treatments and a cure, and more. This podcast has it all!
Living with PSC can also be found wherever you download your podcasts.
|
|
|
|
REGISTER FOR AN UPCOMING ZOOMROOM
|
|
|
|
|
|
ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
|
|
|
|
ZoomRooms are not recorded, and are intended as safe, open forums.
|
|
|
|
ZoomRoom for Adult PSC Patients (18+)
September 21, 6 p.m. MT
|
|
ZoomRoom for Caregivers/ Spouses/Parents
October 13, 6 p.m. MT
|
|
ZoomRoom for
Teens (13-20)
October 19, 6 p.m. MT
|
|
|
|
ZoomRooms and other events of interest to our community.
Help us keep our community informed by sending relevant events to PSC Partners! If you have an event you think should be added to the calendar, send information to contactus@pscpartners.org. Events will be screened for applicability to our community.
|
|
|
|
Living Donor Circle of Excellence
A major disincentive for many donors is the financial burden of being a living kidney or liver donor. A leave of absence for a kidney donor is typically four weeks, and is longer for a liver donor. Not many companies have policies that cover the cost of lost wages. Living organ donors will often use their vacation time or take an unpaid leave of absence in order to be able to take the time off work necessary to donate. Other out of pocket expenses may be incurred such as travel and lodging expenses.
It is a corporate recognition program to promote and celebrate companies that implement internal policies to help support employees who volunteer to be living organ donors. The goal of the program is to eliminate the financial costs of living organ donation for donors.
The aim of this program is to provide recognition with the Circle of Excellence Seal to companies who provide lost wages to living donors. This could be done by implementing internal policies to provide salary support for an employee who chooses to be a living donor and/or the living donor of an employee who lacks salary support during their recovery period. By eliminating the financial barriers during the recovery period, this could increase living donor transplants.
The benefit for companies who implement these types of policies will not only be recognized with the Circle of Excellence Seal, but it may help them attract and retain employees, and this may help their employees return to work sooner.
Article reprinted from The Loon Duct, the newsletter of our Canadian affiliate.
|
|
|
|
|
|
Each month, we highlight a video from the growing collection on our YouTube channel.
This month, we selected video snippits of folks letting us know why they attended the last, in-person PSC Partners Conference.
June 2 - 5, 2022
Boston, Massachusetts USA
in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital.
|
|
|
|
Welcome to Sandi's
Circle
|
|
|
|
Sandi Pearlman and Others Come Up with Alternative Meanings to the PSC Acronym
A section of the book Sandi's Journey, includes a list of PSC words people came up with to replace primary sclerosing cholangitis (PSC). A few examples are below:
Princess Sleeping Contentedly
Please Send Cure
Please Stay Close
Power Strength Courage
We bet you can come up with a few yourself. Try it.
Share your ideas with another PSCer. It's sure to make both of you smile!
|
|
|
|
Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her.
In this space, we share words of encouragement from Sandi and others.
If you have something to add to Sandi's Circle, send it to contactus@pscpartners.org.
Due to space limitations, not all submissions can be added, but we invite everyone to use this space to encourage folks in the PSC community.
|
|
|
|
WE NEED THREE MORE REVIEWS FOR PSC PARTNERS TO MAINTAIN OUR FIVE-STAR RATING!
Won't you help?
Thank you to all the amazing folks who have added a review to Great Nonprofits. We need three more. Please take five minutes to add a review. Even if you sent a review last year, you can review us again. It will make a world of difference for PSC Partners. Thanks, all!
|
|
|
|
The NORD Rare Diseases and Orphan Products Breakthrough Summit is happening on October 18-19, 2021. Each year, more than 900 participants attend to share the latest updates on rare disease diagnosis, genetics and genomics, drug development, patient engagement, rare disease research, FDA oversight and market accessibility of orphan products. Get more information, including a link to registration, on the EVENTS page of our website.
|
|
|
|
Our Mission: The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
|
|
6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
|
|
|
|
|
