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THE DUCT
A Monthly Newsletter for the PSC Community
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Every PSC patient and caregiver's story is different. Take a look below to find out how YOUR unique story can help us spread the word about the need for effective treatments and a cure for primary sclerosing cholangitis (PSC). |
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We Need You!
PARTICIPATE IN THE
MAKING OUR VOICES HEARD VIDEO PROJECT
(P.S. If you have a phone, you can participate!)
Each and every one of us in the PSC community has a unique story. Whether you’re a patient, parent, caregiver, or are carrying on the spirit for a PSC patient who has passed, your one-of-a-kind journey is important and valuable, and we hope you will allow us to use your story and your unique perspective to help PSC Partners in our search for effective treatments and a cure for PSC.
How You Can Get Involved: PSC patients, caregivers, parents, or those carrying on the spirit, PSC Partners has an exciting opportunity for YOU. Make your voices heard by recording a short video (3-5 minutes) telling your personal story or the story of the PSC patient in your life.
Why It’s Important: If you watched last month’s PSC Partners Making Our Voices Heard: Patient-Focused Drug Development (PFDD) Forum, you saw the strength of storytelling as multiple PSC patients and caregivers made their voices heard by sharing how PSC impacts their lives. In fact, we continue to receive positive feedback from FDA, drug development leaders, researchers, and more. Now, we plan on expanding that project to include even more stories from the PSC community. Through YOUR voice, we hope to shine a bright light on the struggles of PSC patients and their caregivers in order to move us closer to the goal of finding a cure for this rare disease. We can’t do it without YOU!
If you are interested in creating your PFDD video, please send an email, with PFDD Video in the subject line, to contactus@pscpartners.org with:
- Your name (first and last)
- Preferred email address
- Preferred mobile number
Once we receive your email, we will send you more information.
Deadline to submit video: Friday, December 11, 2020
Thank you!
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Making Our Voices Heard:
Patient Focused Drug Development Forum
Recording Available
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Were you able to catch all or part of the Making Our Voices Heard: Patient-Focused Drug Development Forum? The event, which was hosted by Veronica Miller (above right), PhD, Executive Director, Forum for Collaborative Research and Professor (Adjunct), UC Berkeley, and Mary Vyas (above left), President of PSC Partners Canada, raised awareness about PSC for attendees who included the FDA, pharmaceutical reps, researchers, and more. Thank you to participants who told their stories, participated on panels, and answered questions. |
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You can see a recording of the full Forum by clicking above. Use this time-stamped agenda to help navigate the recording.
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Watch Final Webinar in PSC Partners 2020 Conference Series
Primary Sclerosing Cholangitis (PSC)
Research and Predictions
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Thank you to the four international PSC experts who presented at the webinar. From left to right: Drs. Johannes Hov and Tom Karlsen, Norwegian PSC Research Center, Dr. Gideon Hirschfield, University of Toronto, and Dr. Lisa Forman, University of Colorado Anschutz. |
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Liver Transplants
and PSC:
A discussion with
Dr. Julie Heimbach
In episode 20, Host Niall McKay talks with Julie K. Heimbach, M.D., transplant surgeon and surgical director of Liver Transplantation at Mayo Clinic.
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"Ideally, we could provide (liver transplants) at the exact time when it is appropriate for the patient. Unfortunately, there are not enough donor livers available for that to happen," Dr. Heimbach tells McKay in this podcast.
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. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
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PSC Partners Collaborates with
American Association for the Study of Liver Diseases (AASLD) on Two Research Grants
PSC Partners Seeking a Cure has been a longtime collaborator with AASLD Foundation in furthering PSC research through support of the AASLD Foundation’s mission. We are, once again, working together, this time in a more significant way, to encourage even more PSC research through co-funding of the 2020 AASLD Foundation / PSC Partners Seeking a Cure Pilot Award. The chosen project, Studying Primary Sclerosing Cholangitis by Bioengineered in vitro Vascular Biliary Model, is being conducted by Yu Du (above), PhD, postdoc at the Center for Engineering MechanoBiology, University of Pennsylvania.
"I am very honored to have received this award. It means alot to me, especially as a visiting scholar," says Du. "Most of my studies have been focused on the liver, and I think this model will be very useful for PSC research."
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The 2020 AASLD Travel Award was given to Vik Meadows, MS, Indiana University, for her research project entitled Depletion of Histamine Reduces Hepatic and Intestinal Mast Cell Activation and Regulates Bile Acid Signaling During PSC.
"I think cholestatic diseases are very interesting," says Meadows. "I know they're rare, but that doesn't make them any less important to investigate."
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This is the 14th year for this award. The first was given to Dr. Tom Karlsen, Norwegian PSC Research Center, in 2007.
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Support PSC Partners During
GIVING TUESDAY
#GivingTuesday is a day dedicated to generosity and giving. It occurs the Tuesday after Thanksgiving, Black Friday, and Cyber Monday, and is a day to acknowledge the power of giving, volunteerism, and simple acts of kindness.
We hope you will support PSC Partners Seeking on Cure on Tuesday, December 1, 2020. Click the button below for more information, and thank you!
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PSC Patient
Kristina Rusher
Encourages Others to Share Recording of Making Our Voices Heard: PFDD Recording
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"I was excited to share the Making Our Voices Heard: Patient-Focused Drug Development Forum recording with family and friends to give them insight into my daily life in ways that are difficult or uncomfortable for me to explain.
The Forum was interesting, engaging, and insightful as everyone’s combined stories, panels, and testimonies depicted a clear picture of the shared experiences, struggles, thoughts, and fears we face every day.
While I have previously shared various “Basics” webinars, hearing the experiences of other patients just like me was much more relatable than learning what the textbook says (or doesn’t say) about PSC. Along with the link to the Forum, I provided a few specific times of certain video testimonials or Q&A segments that really resonated with me and my journey so they could learn more about the reality of the disease.
I appreciated that the perspectives shared were honest, heartbreaking, hopeful,
and show how exquisitely driven we are to keep going through the endless
struggles that are often a mystery to others.
Everyone’s journey truly was
represented. I appreciate all of the hard work that PSC Partners and everyone
put into the forum. I was happy to see our entire PSC community come together and show our strength."
-Kristina Rusher, PSC Patient
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Visit Sandi's Circle on our website for more words of encouragement from Sandi and others.
If you have something to add to this page, 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.
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Won't you help us educate people about primary sclerosing cholangitis (PSC) by sharing the Making Our Voices Heard: Patient-Focused Drug Development Forum recording with people in your circle of friends, family, and medical providers?
Thank you for
the great idea,
Kristina!
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PSC Partners ZoomRooms are a great way to connect with others in the PSC community. This ZoomRoom is for PSC patients 18 years-of-age and older. Anyone who has joined one of the past ZoomRooms can tell you they are interesting, fun, and a great way to spend an hour of your time. Join us!
After registering, you will receive a confirmation email containing information about joining the meeting.
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Our Mission: To provide education and support to PSC patients, families and caregivers and raise funds to research causes, treatments and cures for primary sclerosing cholangitis (PSC). |
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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