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THE DUCT
A Monthly Newsletter for the PSC Community
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We're excited to announce the date for the 2022 PSC Partners Conference.
Please join us in Boston, Massachusetts
June 2-5, 2022
Conference and hotel registration will be available soon.
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Who is ready for a challenge?
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 July 1-September 30, 2021.
Why did we choose 83.01 as a goal?
Because the unique disease code for primary sclerosing cholangitis (PSC) is K83.01.
How can you get involved?
For this fundraising event, walk as an individual or gather 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 you don’t want to walk, or are unable to, you can complete the event in a different way.
You may choose to:
- Paddle
- Pedal
- Rollerblade
- Swim
- Run
- Or choose another form of exercise
If movement is difficult, how about:
- Performing 83 random acts of kindness
- Writing 83 postcards to family & friends
- Crafting 83 friendship bracelets with your kids or grandkids
- Reaching out to 83 people in the PSC community to say hello
- Spreading awareness about PSC to 83 people via cards, phone calls, and emails
- Asking someone (or a team of friends/family) to complete the 83.01 on your behalf
Be creative and complete this unique fundraiser in a way that is fun and doable for you!
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Help Raise Awareness!
We held a contest to name the WALK83.01 mascot. Thank you to everyone who sent in a suggestion. Your creativity was amazing! Congratulations to the anonymous entrant who sent in the name Bili! Bili will help us raise awareness for PSC during this event.
Take Bili on this adventure with you, and post selfies. Use #PSCWALK8301 and #PSCPartners.
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If you are unable to participate but would still like to financially support the WALK83.01 effort, click the button below. Thank you! |
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JOIN US FOR THE NEXT WEBINAR IN OUR
ROADMAP INITIATIVE SERIES
Thursday, July 8, 6-7:30 p.m. MT
ROADMAP 201:
Developing a PROM Tool with the
PSC Patient Voice
Come to the table to help us formulate a more informative PROM (patient reported outcome measure) for PSC
This virtual event is for patients, caregivers, researchers, and clinicians.
The registration link for the July webinar, and more information, will be posted soon on the EVENTS page AND ROADMAP Initiative page of our website.
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If you registered for our ROADMAP Initiative 101 Webinar, Let’s Talk PSC Symptoms: Everything you don’t have time to tell your doctor, we look forward to seeing you tomorrow,
Wed., June 16, 6 p.m. MT
A meeting link will be emailed to you today. Questions? contactus@pscpartners.org.
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JOIN US FOR
2022 PSC Partners Annual Conference
June 2 - 5, 2022
Boston, MA USA
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Watch a video from the 2019 PSC Partners Conference at Mayo Clinic in Rochester, MN.
(This video was put together when we realized we would not be having the 2020 Conference in Denver. So, the messages are out of date, but the photos are classics. Enjoy a peek back, and let's get excited for 2022!)
See you next year in Boston!
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We are already busy planning for the 2022 PSC Partners Conference, in collaboration with Dr. Josh Korzenik, Brigham and Women's Hospital, and Dr. Dan Pratt, Massachusetts General Hospital.
Mark your calendars to join us in Boston, Massachusetts, Thursday, June 2 - Sunday, June 5, 2022.
We are still formulating plans for the conference kick-off, which may start early in the day on Thursday, June 2, so we recommend holding off on making plane reservations until the agenda is finalized.
A link to make reservations at the conference hotel, the Burlington Marriott, will be available ten months prior to the conference. A special rate has been negotiated. Please don't reserve a room until our special conference link is live. We will regularly update the 2022 Conference page of our website, as needed. |
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ATTENTION RESEARCHERS
One Month Left to Get Applications In for
2022 PSC Partners Grants Program
Deadline: July 15, 2022
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PSC Partners and affiliate PSC Partners Canada offer grants to conduct research that addresses an important and novel, basic, or clinical research question related to PSC and closely associated diseases (such as IBD and cholangiocarcinoma). Our Research Grants Program seeks to encourage investigators to conduct research in promising new areas, with the goal that data generated will lead to federal (NIH) or external international funding. PSC Partners is particularly interested in funding projects that have the potential to discover a cure for PSC and/or identify effective therapies.
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Update PSC Partners Registry Contact Information |
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Ensure You're Getting Important Correspondence |
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Has your email address changed? Have you recently moved? It's important that the PSC Partners Patient Registry team is able to reliably get ahold of you. Please, take a minute to ensure your contact information in the PSC Partners Registry is up to date.
Additionally, please be sure that registry email messages are not hitting your spam box. If that's happening, you can easily fix that by whitelisting registrycoordinator@pscpartners.org.
Here are links to videos offering easy to follow, step-by-step instructions:
If you have a different email provider, you can find instructions by entering the question into your search engine.
If you have not yet joined the PSC Partners Patient Registry, we hope you will. It’s your chance to help speed up PSC research. The larger the PSC Patient Registry, the more meaningful it can be for researchers from around the world. You can sign up as a PSC patient or patient guardian by clicking the button below.
THANK YOU!
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ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
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Wed., June 29
ZoomRoom for PSC Teens ages 13-20
6 p.m. MT
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Wed., July 14
ZoomRoom for Adult PSC Patients
ages 18+
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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PSC Recurrence After Transplant and the Importance of Support
A Discussion with
Post-transplant PSC Patient
Mónika Aldarondo
In episode 24, Host Niall McKay talks with Author, Mom, and Host of PSC Mami Podcast Mónika Aldarondo.
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"It's been interesting to learn that recurrent PSC does not follow the same trajectory or path as your original PSC," says Aldarondo. "So far, for me, this has been a really different experience."
In the podcast, McKay and Aldarondo cover several interesting topics, including:
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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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In this video from the 2019 PSC Partners Conference, Konstantinos N. Lazaridis, M.D., Mayo Clinic, discusses Genes and Environment in 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:
2019 PSC Partners Conference Presentation Videos
Did you know that we record all the general sessions and post all the slideshows from past PSC Partners conferences? We post them on our YouTube Channel and on our website.
As anyone who has been to a past conference knows, these sessions are packed with lots of important, interesting, and instructive information.
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Welcome to Sandi's
Circle
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Sandi Pearlman Talks About
Dealing with Primary Sclerosing Cholangitis (PSC)
In the book Sandi's Journey, Sandi Pearlman wrote about the things she missed due to dealing with primary sclerosing cholangitis (PSC).
- I miss my privacy and independence
- I miss my energy
- I miss my cellphone being filled up with friends' names instead of doctors' names and nurse coordinators and transplant secretaries and pharmacies
- I miss being able to count on my body and brain to work the way they always have in the past
But I love when people remember I'm a person, and not just a "sick chick." I love when people laugh with me and show me they care and ask questions, because they want answers and not because they are trying to be polite. I love it when people surprise me with their generosity and understanding. 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.
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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Turn Your Old Rusty Junker (or Gently Used Vehicle) into CASH for PSC Partners
Let's be honest, now that the world is opening up a bit, and we're all spending more time outside, it's getting harder and harder to ignore that old, run-down, barely running car sitting in your driveway, isn't it? No worries! We'll take that old jalopy off your hands, and turn it into funds to help in our search for treatments and a cure for PSC. Really! It's easy.
We thank you, and your neighbors will, too!
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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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