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THE DUCT
A Monthly Newsletter for the PSC Community
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LET'S STAY CONNECTED!
This edition of The Duct is dedicated to the
many ways we can stay in touch and keep increasing our PSC knowledge, because
we may be separated, but we're not alone.
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PSC Partners Conference Postponed Until 2022 |
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Are you missing the smiling faces of friends you normally see at the conference? Take a look at this video, which was created after the cancellation of the 2020 conference. We hope this puts a smile on your face.
Boston, here we come,
in 2022!
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It is with heavy hearts that we announce the rescheduling of the 2021 PSC Partners Seeking a Cure Patient and Caregiver Conference. Out of concern for our patient community and uncertainty about the course of the COVID-19 pandemic, the PSC Partners Board of Directors voted to postpone the conference until 2022. The 2022 conference will be held in Boston, MA, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital. The exact date will be announced soon.
With the knowledge that in-person gatherings are vital for our community, we eagerly anticipate the time when we can be together, again. We have lots of virtual opportunities planned to keep us connected in 2021. Read below for ways to stay in contact with others in the PSC community and continue learning about primary sclerosing cholangitis (PSC).
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A Message From
PSC Partners Founder and CEO Ricky Safer
At our conferences, we always take time to remember people in the PSC community who have passed over the past year. It is a time to support one another in our grief while keeping their memories alive. One of the hardest parts of not being able to gather is not having the ability to hug one another, tell stories about those we have lost, and offer a shoulder to lean on for those who need a little extra comfort. I'd like to remind folks to reach out to one another via phone, email, text, Facetime, etc. Let's Carry On The Spirit for friends and loved ones we have lost.
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ZoomRooms
Are A Great Way for
Peer-to-Peer
Connections!
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Tues., Feb. 23
ZoomRoom for PSC Teens, ages 13-20
6 p.m. MT
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Wed., March 10
ZoomRoom for PSC Patients, ages 18 and up
6 p.m. MT
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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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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 info to contactus@pscpartners.org. Events will be screened for applicability to our community.
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Microbial Metabolism and PSC
A Discussion with Dr. Hov
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In episode 21, Host Niall McKay talks with Dr. Johannes Hov, professor of gastroenterology, University of Olso, Norway, member of the Norwegian PSC research group, and member of the PSC Partners Scientific/Medical Advisory Committee (SMAC). They discuss research being done on PSC and the microbiome.
"What we have been doing, so far, is really to study what is the composition of the microbiome in patients with PSC. What we have found is that it's alot different from individuals who are healthy, but what does this mean? That's really the big question."
McKay and Hov explore this in the 21st episode of the Living with PSC Podcast.
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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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Throughout 2021, PSC Partners is excited to host a new Learning Series. Experts will explore numerous topics associated with PSC and related topics during innovative and educational lectures and discussions. The learning series will be free, open to all, and recorded.
Watch social media, our website, and future editions of this newsletter for more information.
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PSC Partners
Mentor Program for
PEER-TO-PEER CONNECTIONS
The PSC Partners Mentor Program provides much-needed support for people whose lives have been impacted by primary sclerosing cholangitis (PSC). Whether you’re a PSC patient, a parent/ spouse/ caregiver of someone with PSC, or are carrying on the spirit for a PSC patient who has passed, the PSC Partners Mentor Program is for YOU!
Volunteer to be a Mentor
Currently, we are recruiting mentors for this volunteer-run program that is vital to our community. Won't you help? If you have attended at least one PSC Partners Conference, and want to give back to the community by becoming a mentor, please send an email to contactus@pscpartners.org. Put "mentor program" in the subject line. Thank you!
We will be placing Mentees with Mentors soon
We are in the process of refining the mentor/mentee matching process for the Mentor Program. We'll let you know in an upcoming newsletter and on our social media pages when we are ready to recruit folks looking for mentors. In the meantime, watch this video to hear a PSC patient talk about how important the PSC Partners Mentor Program has been for him.
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What is Primary Sclerosing Cholangitis (PSC)? |
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Each month we will highlight a video from our growing collection on our YouTube channel.
This month's selection is
Follow teenager Emmett as he learns more about his PSC diagnosis.
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Welcome to Sandi's
Circle
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Stay Connected Via the PSC Partners Facebook Patient Pages
We have three pages on Facebook to ensure you stay informed and connected. Why do we have three pages? We’re glad you asked! On our Facebook Headquarters Page, we post general announcements, including events, webinars, clinical trials, ground-breaking research, news stories, and more. The PSC Patient/Caregiver Open and Closed Groups are for support and education.
Let Us Share a Bit of History
PSC Partners Open Group: About 14 years ago, a young PSC patient named Sandi Pearlman started the PSC Patient/Caregiver Facebook (FB) Open Support Group thinking it would be a great forum to unite the PSC community. She was right! Sandi got to know every single member in the FB group, and everyone sought her support and the support of others in the group. A few years went by, and, under Sandi's leadership, the group became a close family. Sadly, Sandi passed, but the group continues in her memory, with the goal of caring for the PSC community, increasing awareness of the disease, and, eventually, finding a cure!
PSC Partners Closed Group: As social media privacy issues began to surface, PSC Partners launched a Closed Patient/Caregiver Group for those worried about having their posts seen by the public. This page is a way for patients and caregivers to voice concerns and ask questions in a platform that is strictly for people who are vetted by our volunteer group of administrators. When posting on the closed page, however, please remember that, while the closed group does prevent immediate visibility, nothing is truly private on social media.
We hope you will find support, information, guidance, advice, and more by being a part of all three Facebook pages.
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We are very active on Social Media,
and there are many ways to stay connected!
(Click icons at left to join us.)
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- Follow/Like our HQ page on Facebook, join our PSC Patient/Caregiver Open Group, and request to be part of Patient/Caregiver Closed Group
- Follow us on Twitter for medical posts, PSC educational opportunities, important re-tweets, and more
- Subscribe to our YouTube channel for interesting webinars, PSC educational videos, etc.
- Connect with us on LinkedIn for up-to-date PSC news and events
- Join us on Instagram for community photos, PSC information, interesting videos, and more
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Gear Up to Raise Awareness
We are always excited to offer fun and unique apparel at the PSC Partners Conference Shop. Since you won't have the opportunity to shop there this year, check out the PSC Partners Online Shop. There are lots of choices, and wearing PSC Partners-branded clothing is a great way to raise awareness while looking stylish and feeling comfortable!
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PSC Partners Board of Directors
Gathered Virtually for Successful Retreat
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Despite the need to be apart, the PSC Partners Board of Directors and the PSC Partners Staff virtually gathered last month for a two-day planning retreat. The group voted on many exciting new initiatives that will keep us moving forward in our search for effective treatments and a cure for PSC. Watch social media, our website, and The Duct for more information about these exciting ventures!
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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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