THE DUCT
A Monthly Newsletter for the PSC Community
February 2023
Raise awareness for PSC and other rare diseases on February 28th. There are many ways to get involved. See article below.
Let's All Show Our Stripes on Rare Disease Day!
Tuesday, Feb. 28th
Rare Disease Day is an annual event designed to raise awareness for the over 7,000 rare diseases that impact over 300 million people globally! The National Organization for Rare Disorders (NORD) is the official US partner for Rare Disease Day along with EURORDIS (Rare Diseases – Europe) and others all around the world.

PSC Partners has been a willing and excited participant in this important movement throughout the years, and we need YOU to help us shine the light on PSC and other rare diseases. Here's how you can help:

  • Record a short video saying, "Happy Rare Disease Day!" Include one thing you want people to know about PSC, if you'd like. Send your video to contactus@pscpartners.org. We will share as many videos as possible on our social media pages.

  • Share your video yourself via social media. Be sure to tag PSC Partners and NORD, and use the hashtags #PSCaware, #ShowYourStripes, a #RareDiseaseDay.

  • Post a selfie wearing either PSC Partners gear or striped clothing. Use the tags and hashtags above to amplify your message.

  • Visit the NORD website to see more ways you can get involved in this movement!

Why is a zebra the mascot of Rare Disease Day?

  • ​In medical school, students are trained to look for common ailments and not rare illnesses, hence the saying, “When you hear hoofbeats, think horses, not zebras.” However, doctors should not ignore the possibility of an illness being a zebra. (From RareRevolution Magazine)
AND
  • The zebra is the official symbol of rare diseases and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. (From NORD)
Sign Up for Our Newest E-Newsletter
PSC Partners is excited to introduce PSC Science News. In this email, we share important science and research updates and information about primary sclerosing cholangitis (PSC) and closely associated diseases, such as inflammatory bowel diseases (IBD) and cholangiocarcinoma (CCA).

The first edition hit inboxes last week. In case you aren't on the list or missed it in your inbox, CLICK HERE to read. To be sure this important, timely news reaches you next time, click "Update Profile" at the very bottom of this email, and add yourself to the PSC SCIENCE NEWS list. You can also email us at contactus@pscpartners.org, and we'll add you to the list.
Be an Active Part of the Search for a Cure
Join the PSC Partners Patient Registry Today!
If you are a person with PSC or a parent of a PSC patient, and you haven't yet joined the PSC Partners Patient Registry, now is the time to join. Researchers and drug developers need the data of a large number of patients to conduct effective research. Don't wait to join, be a part of the research. Very soon Registry participants will be receiving a survey on vancomycin usage.

Your information will help bring light to unanswered questions. It takes about 30 minutes to register. You can be part of the search for a cure! Thank you so much! 
REGISTER FOR OUR UPCOMING WEBINAR
Experts will talk about adult and pediatric PSC in a format that encourages back-and-forth conversation and attendee questions. Don't miss it!
SAVE THE DATE for our next webinar Embracing Diversity in PSC: FDA Insights on the Role of Health Equity in Developing Treatments for Rare Diseases, Monday, March 20, 6 p.m. MT. More information, including a link to registration, coming soon.
Get Involved in Cholangiocarcinoma Day, February 16th
Use Graphic Below to Spread Awareness

Wear green on Cholangiocarcinoma Day and post supportive messages for the cholangiocarinoma community. Be sure to tag PSC Partners and the Cholangiocarcinoma Foundation.

Add the awareness month hashtags #curecca and #greenforcca. Get more information on the Cholangiocarcinoma Foundation website.
REGISTER FOR AN UPCOMING
PEER-TO-PEER SUPPORT ZOOMROOM
PSC Partners ZoomRooms provide peer-to-peer support for our community. People who have attended in the past keep coming back, because they know these virtual gatherings are a great place to chat with others who truly understand.

ZoomRooms take place at 6 p.m. MT (5 p.m. PT, 7 p.m. CT, 8 p.m. ET.)
HELP US PREPARE FOR THE
2023 PSC PARTNERS ANNUAL CONFERENCE

Plus, get a sneak peek into what we have planned so far, including date and location
Wait for Tomorrow Fundraiser
Download an Original Song and Support PSC Partners
Tim and Ryan Fullerton recently recorded a lovely song entitled Wait for Tomorrow, which was written by their father Peter in the 1960s. Peter was diagnosed with PSC in 2022. Unfortunately, he passed away right before he was scheduled to record his song in a NYC recording studio, a Father's Day gift from his sons.
 
"We were supposed to record this song with our dad. Now it’s helping to find a cure," wrote Ryan and Tim. "This song fights PSC. Our dad would be proud."
 
CLICK HERE to download this song from iTunes. The song is also available on Spotify, Amazon, and other music apps. All proceeds from the downloads and streams of the songs will be donated to PSC Partners.
 
"The last few months have been really hard as we try to accept the loss of our dad, but working on this song has helped knowing that it will bring awareness to PSC and hopefully bring us closer to finding the cure and end this disease once and for all," wrote the Fullerton family.

If you'd like to donate directly to this fundraiser with or without downloading the song,

Watch the music video for this song below!
Wait for Tomorrow Music Video
Check out the music video for Wait for Tomorrow, a song written by Peter Fullerton and performed by his sons Ryan and Tim. (The song features Peter, as well, from a previous performance.)
Camp Oasis Offers Virtual Fun and Support for
Young PSC Patients with IBD
Crohn’s & Colitis Foundation's Camp Oasis is a summer camp just for kids and teens with IBD. This year, they are encouraging participation by kids with a dual diagnosis of PSC and IBD. Due to timing, this year's offering for the PSC community is limited to their online program, which is full of fun, interactive activities, and a chance to meet other kids who understand what it's like to live with IBD. Last year, 185 campers chose the virtual option.

According to camp leaders, kids who attend Camp Oasis experience:
  • Decreased isolation
  • Increased hope, and
  • More confidence when speaking about their disease

The deadline to apply is June 1, 2023. CLICK HERE for more information.
Attend Webinar Series Focused on Pruritus
The Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc. (PFIC) is hosting a webinar series addressing pruritus (itching), which may be of interest to many in our community.
Topic: Pruritus Coping Skills

Topic, Date, and Time:
Considering the Role of Stress in Pruritus
Thurs., Feb. 16, 2023, 2 p.m. ET

Tips for Managing Stress
Thurs., Feb. 23, 2023, 2 p.m. ET

Thinking about Thinking
Thurs., March 2, 2023, 2 p.m. ET
According to PFIC, even if participants do not struggle with pruritus specifically, this webinar series will still provide helpful information on coping methods for stress and anxiety. The series will be led by Caitlin Schneider, a clinical psychology doctoral student at Georgia State University. During the weekly sessions, attendees will learn about the role of stress in pruritus, tips for managing stress, interventions for chronic itch, and tips on how to find a therapist.


Welcome to Sandi's
Circle

Sandi Pearlman Offers 11 Reasons to Attend the
PSC Partners Conference
In her book Sandi's Journey, Sandi talks a lot about the PSC Partners Annual Conference. Because we are finally able to meet again in person this year, we think it's the perfect time to list her top 11 reasons folks should attend the PSC Partners Annual Conference:

  • Know You're Not Alone
  • Experience the Joy and Hope
  • Become Informed
  • Be a Part of the "In" Crowd (instead of being "the other")
  • Scratch, Itch, Nap in Peace
  • Make Lifelong Friends
  • Get Practical Tips to Improve Your Daily Life
  • Find the Meaning: Learn How to Make a Difference in Your Own Life and Other PSCers' Lives, if You So Choose
  • Be With People Your Own Age Who Worry and Wonder About the Same Things
  • Put an Actual Face to Your Facebook Friends
  • Allow Parents and Caregivers to Talk with Others, Too

We are so excited to see everyone in person this year, and we will provide date and location information about our 2023 Annual Conference very soon!

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.
If you have something to add to Sandi's Circle, send it to contactus@pscpartners.org.
Matching Gifts
Did you know that many companies match employee gifts to charitable organizations and/or volunteer time? If your place of work matches charitable donations, don’t forget to tell them about your gift to PSC Partners. This is a terrific way to multiply the impact of your donation! If you have any questions, email contactus@pscpartners.org.
Our Mission: PSC Partners Seeking a Cure drives research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
(303) 771-5227
6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111