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THE DUCT
A Monthly Newsletter for the PSC Community
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One team, Emmett's Posse, kicked it off in a big way with a walking party.
This fundraiser is ongoing through September 30th. You can join and/or donate at anytime. Even if you aren't able to exercise, there are still ways for you to get involved in this FUN fundraiser. See information in the article below.
Together, we are creating a world where a PSC diagnosis comes with a cure!
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Raise Funds and Awareness for PSC
Join WALK83.01 for PSC
Anytime Between Now and September 30th
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How can you get involved?
For this fundraising event, walk 83.01 miles (133.5 km) as an individual or a team, wear PSC Partners gear (Link to Shop Here), and raise funds for PSC research! Donations can be made per mile/km or given in one lump sum. $83.01 is the suggested donation, but feel free to raise more or donate whatever amount feels comfortable to you.
If movement is difficult, or you're not up for walking 83.01 miles, here are some ideas of ways you can still get involved in WALK83.01 for PSC:
If you want to participate via physical exercise, but walking isn't your thing, you can complete the miles in your own unique way.
You may choose to:
- Paddle
- Pedal
- Rollerblade
- Swim
- Run
- Or ask someone to complete the miles on your behalf
Why did we choose 83.01 miles (133.3 km)?
Because the unique disease code for primary sclerosing cholangitis (PSC) is K83.01.
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JOIN US FOR THE NEXT WEBINAR IN OUR ROADMAP INITIATIVE SERIES |
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and links to recordings of past webinars.
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What is the ROADMAP Initiative Series &
Why Should You Participate?
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We're so glad you asked!
We know our ROADMAP Initiative is new. Please take a minute to learn more about this important opportunity for YOU to get involved in the search for treatments and a cure for PSC.
What is the ROADMAP Initiative?
The ROADMAP series is designed to build a foundation of knowledge and collaboration in preparation for the PSC Partners 2022 Annual Meeting, June 2-5, 2022. We can’t do this without you!
What topics will the ROADMAP Initiative cover?
Who should participate in the ROADMAP Initiative?
Whether you're a PSC patient, post-transplant PSC patient, caregiver, clinician, or researcher, WE NEED YOUR VOICE! By sharing your PSC experience and hopes for the future, you will definitely be part of the team working to find effective treatments, and, finally, a cure for PSC. Additionally, attending educational sessions ensures that our entire community is up to speed on topics important to all of us. Every voice makes a difference.
How many sessions are there, and how often do these webinars occur?
We anticipate 2-3 webinars per topic. The webinars are scheduled about every six weeks. Keep an eye on the EVENTS Calendar on our website for future sessions. The webinars are divided into two sections. During the first half, experts disseminate information on the given topic. During the second half, attendees are divided into breakout rooms to discuss the topic and share thoughts/experiences. The second half is not recorded, but careful notes are taken. All comments are de-identified.
What happens if I miss a session?
While attendance is valuable for wide-spread, accurate distribution of information, and, more importantly, to ensure that your voice is added to the conversation, we understand that life sometimes gets in the way. The first half of all the ROADMAP Initiative sessions are recorded, so you can catch up on any subject anytime. For privacy reasons, we do not record the breakout room conversations, but we do take careful notes and aim to share a summary of these conversations with our community.
Visit our YouTube channel to view past ROADMAP Initiative webinars and other PSC Partners videos.
Together, we will find treatments and a cure for PSC!
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Use of Antibiotics for Clinical Treatment of Cholangitis in PSC
A Discussion with
Dr. Gideon Hirschfield
Toronto Centre for Liver Disease
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In episode 25, Host Niall McKay talks with Dr. Gideon Hirschfield, member of PSC Partners' Scientific/Medical Advisory Committee (SMAC), about the use of antibiotics for the treatment of infection in primary sclerosing cholangitis (PSC). Hirschfield says that antibiotics are used for the treatment of intermittent, symptomatic cholangitis in patients with PSC.
"There's no evidence that the long-term use of antibiotics will change what ultimately happens to PSC patients," says Dr. Hirschfield. "But there's definitely evidence that, once you've got an infection, that drives PSC progression, which makes sense. Once the biliary tree is inflamed, it's never the same."
McKay and Hirschfield touch on various PSC-related topics, including research into new ways to treat PSC symptoms.
Dr. Hirschfield is the inaugural Lily and Terry Horner Chair in Autoimmune Liver Disease Research at the Toronto Centre for Liver Disease, Toronto General Hospital, and Professor of Medicine in the Division of Gastroenterology at the University of Toronto. As a clinician-scientist, Dr. Hirschfield manages a broad platform of translational and trials-based clinical science with the goal of advancing therapies for patients with inflammatory liver disease that prevent the need for transplantation.
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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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ATTENTION RESEARCHERS
Today is the Last Day to Get Applications In for
2021 PSC Partners Grants Program
Deadline: July 15, 2021, 11:59 p.m., MDT
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In 2020, we announced the funding of seven international studies, plus three more in conjunction with our affiliate PSC Partners Canada. This brings our funding total to more than $4 million.
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REGISTER FOR AN UPCOMING ZOOMROOM
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ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
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ZoomRooms are not recorded, and are intended as safe, open forums.
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ZoomRoom for Caregivers, Parents, and Spouses
August 17th, 6 p.m. MT
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ZoomRoom for Teens
(Ages 13-20)
August 31, 6 p.m. MT
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ZoomRoom for Adult PSC Patients (18+)
September 21, 6 p.m. MT
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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.
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Each month, we highlight a video from the growing collection on our YouTube channel.
This month's selection is:
ROADMAP Initiative Webinar 201
Integrating Clinician, Researcher, and Patient Perspectives in the Development of a
PROM for PSC
(PROM = Patient Reported Outcome Measure)
One of the attendees at this webinar said, "I got a much better sense of the rigorous methodology behind PROMs and the volume of work required from researchers and clinicians in order to have this lead to drug or treatment development."
Click arrow on the ROADMAP Initiative graphic at left to view the recording of the most recent webinar in our ROADMAP Initiative series.
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Welcome to Sandi's
Circle
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Sandi Pearlman Talks About
the Feeling of Inclusion Patients Feel at
PSC Partners Annual Conference
In the book Sandi's Journey, Sandi Pearlman wrote about many things, including the importance of gathering together and offering support.
"Too often, PSC can make us feel like we're in the shadows, like we have to search for sunlight and happiness. We're others. We're alone, and we're trying to navigate a world in which we're the Oscar the Grouches of Sesame Street, the ones who are always left out of the fun and freedom the rest of the world so easily enjoys," she said.
"At the PSC Partners conference, there's just no chance to feel like an outsider. We come from all over the world and speak many different languages. We're in all stages and have different levels of knowledge about PSC and what it means. Some of us are well-informed, some of us just beginning our PSCer journeys. It doesn't make a difference."
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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.
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Support PSC Partners Through a
Donor Advised Fund
A donor advised fund (DAF) is a type of giving program administered by a third party that provides you with the flexibility and most favorable tax benefits to easily support your favorite charities. DAFs are designed to manage charitable donations on behalf of an organization, family, or individual and are becoming increasingly popular. They are an excellent way to simplify your charitable giving and facilitate your strategic philanthropic goals. You will receive a tax deduction when you make a contribution of cash, stock, and other assets to your DAF and, at a later time, you can grant specified amounts to the charities of your choice. Explore a DAF today.
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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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