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THE DUCT
A Monthly Newsletter for the PSC Community
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Some PSC patients will face a liver transplant on their PSC journey. A proposed change in policy could improve the liver allocation process for PSC patients, but we need YOUR help. See article and video below.
Send in your comments by March 23rd. Thanks!
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URGENT CALL FOR COMMENTS ON NLRB PROPOSAL
Proposed Change Would Improve Liver Transplant Prospects for PSC Patients
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How YOU Can Help
We have a unique opportunity to make our voices heard and bring about an important change. This is an urgent call to action. PSC Partners supports the proposed National Liver Review Board (NLRB) policy change, which is specifically for PSC patients on the transplant waitlist. We need PSC patients and caregivers to show support for the revised PSC guidelines, which are a positive change for PSC transplant candidates. Add your voice today!
Proposed Policy Change
The NLRB recently reviewed the PSC guidelines and waitlist dropout rates, which includes patients who die or are too sick to transplant. They found that PSC patients with high MELD (adult)/PELD (child) scores greater than 37 had a higher waitlist dropout rate than other transplant candidates. The NLRB responded by proposing guidance changes for PSC patients with frequent hospital admissions for cholangitis with a documented blood stream infection or sepsis.
What YOU Can Do Before March 23rd
- It is critical that large numbers of PSC patients and caregivers respond to this positive proposed change for PSC transplant candidates.
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We need you to submit your message supporting this change.
- In addition to voicing your support, it's also recommended that you include a bit about your PSC journey, or the journey of the PSCer in your life, but the comment does not need to be detailed or take a long time to draft.
- You are permitted to remain anonymous, if that is important to you, although signed messages with a brief story may be more meaningful.
We recommend you read through the information on our website before commenting.
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Once on the site, click links on top left of page to
Provide Feedback, Read Proposal, or View Comments.
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ROADMAP to the
2022 Annual Conference
Exciting News: 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 community virtual gathering on April 20, 2021.
During the ROADMAP series, you will have the opportunity to help shape the future of PSC research by:
- learning about what is known and yet to be discovered about PSC
- sharing your hopes and needs for symptoms, treatments, and more
- engaging with PSC and IBD expert researchers and clinicians
- developing collective knowledge within our community
- building relationships and collaborating with others, and
- preparing for learning and engagement with PSC and IBD expert researchers and clinicians
Mark your calendar for April 20, 6-7:30 pm MT.
Login Information will be available on our EVENTS page soon.
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WE ARE CURRENTLY LOOKING FOR MENTORS!
The PSC Partners Mentor Program provides much-needed support for people whose lives have been impacted by primary sclerosing cholangitis (PSC).
We are in need of mentors for this vital, year-round, peer-to-peer support program. If you have attended at least one PSC Partners Conference and want to give back to the community by becoming a mentor, you can be a mentor and make a big difference in someone's life!
Watch the video to hear a PSC patient talk about how important the PSC Partners Mentor Program has been for him.
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Looking for a Mentor? Our mentee recruitment will begin soon! Watch upcoming issues of The Duct for more information. We also regularly post updates on all of our social media pages. Follow us on Facebook, Twitter, Instagram, LinkedIn, and YouTube. Links at bottom of the newsletter.
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ZoomRooms
Are A Great Way for
Peer-to-Peer
Connections!
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Tues., April 13
ZoomRoom for Caregivers/ Spouses/ Parents
6 p.m. MT
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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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Visit the EVENTS PAGE on our website for all scheduled ZoomRooms and other events of interest to our community. 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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The Importance of the PSC Partners Registry
A Discussion with
Registry Director Rachel Gomel
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In episode 22, Host Niall McKay talks with PSC Partners Patient Registry Director Rachel Gomel about the value of the PSC Patient Registry and the importance of this database in the search for treatments and a cure for PSC.
"The collected information helps in our understanding of where our rare patients are located. The registry also shows us who could be a match for a specific clinical trial, and how aggregated data collected on patients can show disease trends and unmet needs," says Gomel. "The privacy of the patients is of utmost importance to PSC Partners," she adds.
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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! Check out all episodes here.
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In the most recent post on the PSC Partners Blog, PSC patient Julianne Vasichek recalls a week of her life that began with a PSC Partners awareness event and fundraiser, and ended with a liver transplant.
"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. You really do light up my days in many ways, and have really been there every step of the way to lift me up. Thank you to each and every one of you. We will find those treatments and a cure. 'Together in the Fight, Whatever it Takes!'," says Vasichek.
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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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What is Primary Sclerosing Cholangitis (PSC)? |
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Each month, we highlight a video from the growing collection on our YouTube channel.
This month's selection is
For PSC Awareness Day 2020, PSC patient Nicole answered the question, "What do you want people to know about PSC."
She says, "PSC affects people of all ages, all genders across the globe."
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Welcome to Sandi's
Circle
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Encouraging Participation in the PSC Partners Mentor Program
We hope folks will sign up to be mentors. (See story above.) Need a little encouragement? Here are some inspiring words from Sandi Pearlman.
"Isolation is one of the worst parts of having a rare, chronic illness that even doctors have to ask you to repeat the name of, let alone your closest friends and family members," says Sandi in her book Sandi's Journey. "Too many of us feel all alone and are stuck having to wonder if what we are going through is normal."
As stated in her book, Sandi, "Dedicated herself to ensuring that those with PSC and their caregivers were not alone, that systems were put in place for those with PSC and for their caregivers to get, provide, and share information."
With that in mind, she was the first chairperson of the PSC Partners Mentor Program. The program is now run by long-time volunteer, PSC caregiver, and newly elected member of the PSC Partners Board of Directors Trish Stoltzfus. Thanks, Trish!
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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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Join Us On
The Road to a Cure
Host a Personal Fundraiser
Personal fundraisers are a great way to support PSC Partners Seeking a Cure. We know, during the pandemic, it's difficult to throw events, but we have a few ideas for you:
Be a part of Team PSC!
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Host a Virtual Pajama-Party Movie Night: Invite your friends to a virtual movie night. Before the movie, show one of the PSC Partners videos.
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Start a Facebook Fundraiser: Invite your Facebook friends to support PSC Partners.
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Invite Friends to Support Your Bike-a-Thon: Encourage friends to collect pledges for miles, and either keep track of your own progress, or ride together, socially distanced, on a designated day.
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Click here to fundraise directly through PSC Partners Road to a Cure page.
- Plan another fun event. (Please share your ideas with us.)
Thank you for your support!
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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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