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THE DUCT
A Monthly Newsletter for the PSC Community
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What's everybody smiling about? If we were guessing, we'd say it's because they are looking forward to next week's ROADMAP Initiative Kickoff Event!
We're excited, too, and we need our community to
support this free, informative event.
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ROADMAP Initiative Kick-off:
A Community Event
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In-Depth...Engaging...
Thought-Provoking
Join us for the April 20th virtual kick-off meeting for the PSC Partners ROADMAP: Research Objectives and Development Meetings to Accelerate Progress.
The ROADMAP journey commences with our inaugural virtual community gathering on Tuesday, April 20, 2021, 6-7:30 p.m. MT.
At the kick-off meeting, six experts will address a variety of topics including:
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Josh Korzenik, MD: PSC Partners’ International Collaborative Research Network and the 2022 Conference
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Chris Bowlus, MD: PSC Partners’ Registry and Our COVID-19 Vaccine Study
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Veronica Miller, PhD: History of Patient Advocacy in Drug Development
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Ruth-Anne Pai, PhD: Collaborative Research Network Model
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Terry Jo Bishell, PhD: Impact of Patient Input in Drug Development
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Jesse Kirkpatrick, PhD: Scientist/Sibling Perspective
During the ROADMAP Initiative, you will have the opportunity to:
- Hear the exciting plans for the ROADMAP webinars
- Find out how you can have a significant impact on PSC research
- Share your hopes and needs for symptoms, treatments, and more
- Attend educational sessions to bring everyone up to speed
- Prepare for learning and engagement with PSC and IBD expert researchers and clinicians
- Develop collective knowledge within our community
- Build relationships and collaborate with others
At the kick-off event, we will reveal three exciting announcements you won't want to miss!
Join us on April 20, 6-7:30 pm MT.
Login Information is available on our EVENTS page.
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APPLICATIONS ARE NOW BEING ACCEPTED FOR THE PSC PARTNERS SEEKING A CURE
2021 RESEARCH GRANTS PROGRAM
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Applications are now being accepted for the PSC Partners research grants program. Grants are offered to scientists conducting research for PSC and closely associated diseases.
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Questions? contactus@pscpartners.org
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E-Newsletter Available for
PSC Partners Patient Registry Participants
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Viaduct
If the word viaduct evokes an image of a bridge carrying a road or railroad, you’re on the right track! But what is The VIADUCT? It’s the new PSC Partners Registry newsletter, so named with a nod to the PSC Partners newsletter, The DUCT, and the Canadian PSC Partners newsletter, LOON DUCT.
But we also selected the word viaduct because of its meaning.
The Registry is the bridge carrying data to researchers and helping our community reach the destination of a PSC cure. The VIADUCT is available to Registry participants and is an additional feature of our enhanced Registry.
Please join the Registry to add your voice. If you’ve already joined, be sure to check your inbox for the inaugural issue of The VIADUCT, which was published in March.
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Say Hello to New PSC Partners Staff Members
PSC Partners is excited to welcome two new staff members to help us in our search for treatments and a cure for PSC.
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Ruth-Anne Pai, PhD
Director of Research Strategy
Ruth-Anne joined PSC Partners this week after previously consulting for the organization and others as a scientific advisor. She is a passionate advocate for those living with rare disease and strives to center the patient voice in the development of research initiatives. Her PhD dissertation included identification of two new treatments for an idiopathic form of Castleman disease – another rare disease with liver involvement. Ruth-Anne completed a PhD in Immunology at the University of Pennsylvania and BA in Biological Sciences at Cornell University.
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Gretchen Perryman
Executive Assistant
Gretchen joined PSC Partners this week. Prior to PSCP, she worked for Kellogg Fellows Leadership Alliance (KFLA), an organization that creates leadership opportunities for 1700+ Fellows worldwide. She also worked for Rose Community Foundation whose mission is to advance inclusive, engaged, and equitable Greater Denver communities through values-driven philanthropy. Additionally, she worked for Great Outdoors Colorado, a state trust funded by lottery that awards grants to preserve and enhance Colorado parks, wildlife, trails and open space.
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ZoomRooms
Are A Great Way for
Peer-to-Peer
Connections!
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Wed., April 28
ZoomRoom for PSC Teens, ages 13-20
6 p.m. MT
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Tues., May 11
ZoomRoom for PSC Patients, ages 18 and up
6 p.m. MT
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Tues., June 15
ZoomRoom for Caregivers/ Spouses/ Parents
6 p.m. MT
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Wed., June 29
ZoomRoom for PSC Teens, ages 13-20
6 p.m. MT
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ZoomRooms are not recorded, and are intended as safe, open forums.
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Visit the EVENTS PAGE on our website for all scheduled 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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by Billy Boloby aka Jason Budjinski
In the most recent PSC Partners blog post, PSC patient Jason Budjinski suggests ways to cope with a chronic illness.
"It’s no coincidence why the word 'patient' has two meanings. Just ask anyone with a chronic illness: It takes long-term patience to be a long-term patient. Besides the frustration of having an illness without a ready-made cure, there’s all the other stuff you have to deal with: hurdles (financial), hassles (doctor’s office, hospital, pharmacy), headaches (insurance) and hardships (physical and mental). Welcome to the Four H Club."
This was originally posted in 2013 on Jason's personal blog, and was re-posted on the PSC Partners blog with his mother's permission.
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Want to discuss adding your voice to the PSC Partners Blog-o-sphere?
Email contactus@pscpartners.org.
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Each month, we highlight a video from the growing collection on our YouTube channel.
This month's selection is
Expert Updates in Liver Transplant, Clinical Trials, and
Future Research Trends
In the 6th webinar in the PSC Partners 2020 Conference Series, experts discussed various aspects of PSC.
To view all PSC Partners videos, including all the webinars in our 2020 webinar series, visit:
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Welcome to Sandi's
Circle
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Sandi Offers Tips on Communicating with PSCers
In the book Sandi's Journey, Sandi shares some tips about communicating with people who have a chronic illness.
"I love it when people remember I'm a person, and not just a 'sick chick.' I love when people laugh with me, show me they care, and ask questions, because they want to know the answers, and not because they are just being polite. I love it when people surprise me with their generosity and understanding, and I love it when people remember that I'm not an only child, and that my sister still exists and matters, and that my parents are more than just the parents of a chronically ill daughter. I love it when people see me as a person first rather than a sick person."
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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.
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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It's Super Easy to Support PSC Partners Via
Your online shopping can earn donations toward better treatments and a cure for PSC!
PSC Partners is a registered charity with AmazonSmile, Amazon’s give-back program for nonprofits. Every eligible purchase results in a donation when you select PSC Partners Seeking a Cure as your designated cause!
Invite your family members, friends and colleagues to use AmazonSmile, and help support PSC Partners!
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Nominate a Post-Transplant PSCer
Before April 30th
The Chris Klug Foundation is looking for TWO organ recipients who haven't only bounced back from transplant, but also give back to the transplant community.
Know someone from the PSC community?
Nominate them 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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