THE DUCT
A Monthly Newsletter for the PSC Community
September 2020
Sign Up NOW for
Making Our Voices Heard:
Patient-Focused Drug Development Forum
October 23, 2020, 10 a.m.-3:30 pm ET
Save the Date -- Sign Up -- Spread the Word
Making Our Voices Heard:
Patient-Focused Drug Development Forum (PFDD)
This gathering is a unique, valuable opportunity for primary sclerosing cholangitis (PSC) patient voices to be heard by attendees who will include the FDA, pharmaceutical leaders, researchers, and clinicians. 

All PSC patients and caregivers are encouraged to participate in this free, once-in-a-lifetime, virtual forum. You can choose to just listen in, or you can share your PSC experiences and challenges before, during, and after the Forum, including on the sign up form.

Please contact your friends and family and encourage them to attend this vital meeting.

OUR VOICES SURVEY: There's still time to add YOUR VOICES to the OUR VOICES Survey. This survey will form the groundwork for the PFDD Forum. We encourage PSC patients to complete the survey. Parents and caregivers of PSC patients, and those carrying on the spirit for PSC patients who have passed, can complete the survey on their PSCers' behalf. We are especially in need of male and pediatric information. Click here for survey link.
GET CREATIVE!
EXPRESS HOW PSC IMPACTS YOUR LIFE
A picture is worth a thousand words! Create artwork that expresses how this often-invisible illness makes you feel. Whether it's visual art, a poem, a photograph, or some other form of artistic expression, we want to hear from artists of all ages. (Yes, adults, even YOU!) The de-identified artwork will be displayed throughout the Making Our Voices Heard: PFDD Forum, and/or included in the Voice of the Patient final report. Send an email with artwork attached to contactus@pscpartners.org.
SEND PHOTOS! Please send a photo of your PSCer who was diagnosed when they were under 18. If you are carrying on the spirit for a PSCer who has passed, we would also love to honor and remember them. Please send a photo. Many people wish to maintain their privacy, so we are not displaying names. Attach photos to an email and send to contactus@pscpartners.org.

The final webinar in our PSC Partners 2020 Conference Series is coming soon. Watch for announcements.
To view all PSC Partners videos, visit our YouTube Channel.
All webinars in our conference series are also available on our website.
Visit the Upgraded, Enhanced
PSC Partners Patient Registry
Your PSC Partners Patient Registry Team is eager to formally introduce you to the upgraded registry website and enhanced registry program. The mobile-friendly site, found at pscpartnersregistry.org/, has a whole new look and feel with enhanced features and additional resources. With a growing database of registrants’ de-identified medical information, the Registry remains our community’s most powerful means of advancing PSC research.

The whole Patient Registry experience going forward will be more interactive and communicative, including updates on how your data is at work in studies and trials; information about other important PSC research; additional, focused surveys linked right to the website; and a quarterly newsletter that will launch later this year.
 
The Registry is now able to house numerous surveys that can help researchers better understand PSC. With COVID-19, clinical trials have slowed down. This has been a time for surveys. So far, these are surveys to capture the unmet needs of PSC patients and surveys to help drug developers prepare for their clinical trials for PSC. Through the Registry, PSCers can participate in the research virtually. It is a new era in PSC research. We ask our community to be responsive and join in the research. 

Please help us help you – check out the new Registry site at pscpartnersregistry.org/. We are together in the fight!

Current registry members, your login will work at the new site.
The PSC Partners ZoomRoom virtual get-togethers are great ways for our community to stay connected and engaged during this time of separation.

Catch Up on Living with PSC Podcasts
Next month, we will be recording and sharing the 20th episode of our Living with PSC Podcast. Before that happens, catch up on the last 19 informative, interesting, thought-provoking interviews.


The Living With PSC Podcast is 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!
USE TOOL KIT TO EXPRESS CONCERNS TO
UNITED NETWORK OF ORGAN SHARING (UNOS)
Check out our UNOS Educational Tool Kit! This new resource helps the PSC community communicate transplant concerns to UNOS, the national organization that sets policy and enforces the rules for organ allocation. UNOS is currently holding a public comment session through October 1, 2020. If you have concerns about how PSC patients fare under these policies or wish to better understand the process, visit our website or download the toolkit directly.

Questions? contactus@pscpartners.org
Sandi's Circle
A Special Message About the Best and Worst Parts of a PSC Patient's Life
Welcome to Sandi's Circle. 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 will not only share some of Sandi's pearls, but we'll also share inspirational tidbits from others in the PSC community.

Once, Sandi was talking with a counselor, and she recalled this exchange:

"(The counselor) asked me what was the best thing that ever happened to me. I responded that it probably hadn't happened, yet. She frowned and asked me what was the worst thing that ever happened to me. I said, well, it probably hasn't happened, yet. Her response, I swear, was that she thinks I need therapy.

She couldn't understand why I wouldn't say PSC was the worst thing that ever happened to me. But the truth is, I find my answer hopeful that there's more to come, that PSC isn't the defining characteristic of my life.

Don't get me wrong. PSC sucks, but PSC also gives us an edge. We know life is precious. It's ours for this day, and hopefully, for the next, and we're not going to waste it."

-Sandi Pearlman

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 hope to use this space to encourage folks in the PSC community.
Attn Federal Employees
It's CFC Time, Again!

PSC Partners participates in the Combined Federal Campaign (CFC), and our CFC code is 79370.

The mission of the CFC is to promote and support philanthropy through a program that is employee focused, cost-efficient, and effective in providing all federal employees the opportunity to improve the quality of life for all. CFC is the world's largest and most successful annual workplace charity campaign.

Make Sure You Wear Your PSC Partners Garb for
PFDD Forum &
PSC Awareness Day

We've recently added new options to our online store. Check them out, and pick up something to wear for our upcoming virtual events. This is a great awareness-raiser!

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).
(303) 771-5227
6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111