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THE DUCT
A Monthly Newsletter for the PSC Community
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Join the Search for Treatments and a Cure by Joining this FUN Fundraiser! |
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Join the Walk For a Cure
We hope you’ll join the PSC Partners staff and Board of Directors on our mission to raise PSC awareness and funds by walking 83.01 miles (133.5 km) between June 1-July 31, 2024. This is the fourth year of this FUN fundraiser, which has raised more than $200,000 since it kicked off in 2021. You can WALK 83.01 miles, pick a distance that works for you, or split the miles with friends and family.
In recognition of PSC Partners' 20th Anniversary, this year's goal is $120,000.
Donate to PSC Research Whether You Walk or Not
If you're not up to walking at all, no problem. This is a fundraiser, and we hope you'll consider donating, anyway. We suggest a minimum of $83.01 in keeping with the theme, but a donation in any amount that is comfortable for you will support PSC research. Every contribution, large or small, gets us closer to finding treatments and a cure.
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Host a Kick-Off In Your Area
On June 1st, or a date close to that, we hope many in our community will gather in their special parts of the world and walk together to kick off WALK83.01 for PSC Research, How do you do it? It's easy. Pick a starting spot and time, and let us know. We'll get the word out about your plan, and encourage others to join you for a walk. All you have to do is let us know.
Here are two kick-off dates already planned:
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DENVER, COLORADO - June 1st, 10 a.m.: Join folks in the Denver area for a WALK83.01 kick-off. Meet in the back parking lot of the Denver office, 6900 E Belleview Ave, Greenwood Village, CO. We will walk a mile down the Highline Canal together.
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ORONO, MINNESOTA - June 1st, 9 a.m.: Kathy Halloran is hosting a kick-off at Bederwood Park, 55 Stubbs Bay Rd. S.
Where will you be kicking off your walk on Saturday, June 1st? Send us an email with the details to contactus@pscpartners.org.
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People with PSC:
Please Take This Brief Acute Cholangitis Survey
to Provide Missing Patient Perspective
If you have had mild or severe bile duct infection, also known as a PSC flare or cholangitis attack, please complete this brief survey.
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Little is known about symptoms experienced by a person with PSC before and during a PSC flare or acute cholangitis attack. Your survey responses will help bring clarity to this poorly understood, common PSC occurrence and are an important step towards finding treatments and improving quality of life for those impacted by PSC.
This survey should only be taken by PSC patients, not caregivers, and can be finished in about 20 minutes. If possible, please complete the survey by May 24th, as we would like to share this important information at an upcoming meeting with PSC clinicians and researchers. Thank you!
This survey has been developed by PSC Partners and PSC Support UK as part of their work with the PSC Forum Acute Cholangitis Working Group.
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Virtually Join Canadian Paediatric PSC Day
June 1, 2024
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You can join Canadian Paediatric PSC Day from the comfort of your own home. Registration is required, and a zoom link to join the event will be delivered by email.
This event is designed for paediatric people with PSC under age 18 and their families. Please join us! Click HERE for event information, including the agenda, speaker bios, and more. French and ASL interpretation will be available to online attendees.
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Reserve Your Room for the
2024 PSC Partners 20th Anniversary Conference
Arizona Grand Resort in Phoenix, Arizona
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The Conference will be held October 18-20, 2024, at the Arizona Grand Resort, approximately 10 minutes from the Phoenix, Arizona, Sky Harbor Airport. Discounted rooms have been reserved for the 2024 PSC Partners 20th Anniversary Annual Conference.
Deadline to reserve a room at the discounted rate: September 24, 2024
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Before Reserving, Please Read This Important Information About the Resort:
- If you would like to come early or stay late, we have been able to extend our discounted rate to three days pre-conference and three days post.
- All rooms are suites, including a separate living room with a queen sofa bed.
- If you have any questions about your hotel reservation, special needs, etc., call the reservations line at 877-800-4888.
- Check-in time is 4 p.m., and check-out time is 11 a.m.
- On Sunday morning, there will be a room where you can store your luggage until the Conference concludes.
- The hotel golf course will be reseeded the week of our Conference, but they will recommend golf courses close by for those interested in golfing.
- Please be aware that we are planning on the water park being open, but it’s at the hotel’s discretion.
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Click the arrow below to get a peek inside this year's Conference venue. |
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Upcoming ZoomRoom Virtual Support Groups
Registration Required
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"No one really wants to have PSC, but I, to this day, tell a lot of people that I felt so lucky to have a disease with this dedicated special support group."
-- ZoomRoom Attendee
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Caregivers, including Parents and Spouses
Wed., May 29, 2024
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Living with Loss & Carrying on the Spirit
Mon., June 3, 2024
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Teens with PSC and/or Post-Transplant
Tues., July 9, 2024
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We will review all submissions for interest to our PSC community.
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Early Detection of Cholangiocarcinoma:
A Conversation with Dr. Jesse Kirkpatrick
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In episode 44 of the Living with PSC Podcast, Host Niall McKay talks with Jesse Kirkpatrick, Ph.D., a third-year Harvard University medical student, researcher at MIT, PSC Partners board member, and family member of a person with PSC.
They discuss Dr. Kirkpatrick's research on early detection of Cholangiocarcinoma, a rare cancer for which people with PSC are susceptible. It is often difficult to treat in our population, because Cholangiocarcinoma is typically detected late in people with PSC.
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"Cholangiocarcinoma is quite a devastating cancer that affects the biliary tree," says Dr. Kirkpatrick, adding that early detection increases survival rate. "In PSC patients, the most common surgery that is done in the early-stage bile duct cancer is actually a liver transplant, which was pioneered by the Mayo Clinic, and can actually be a cure, as long as it is detected at an early stage. Unfortunately, the vast majority of bile duct cancers in PSC patients are detected at an advanced stage."
Kirkpatrick and others are working to develop better diagnostic and screening tests for bile duct cancers to enable earlier detection and better outcomes for patients. In 2023, he was the winner of the American Medical Association Research Challenge for his work in this area.
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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Our Mission: PSC Partners Seeking a Cure drives research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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