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THE DUCT
A Monthly Newsletter for the PSC Community

Research

Conference

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June 2024

Meet Our New Executive Director Audra Flemming

PSC Partners is excited to announce a new member to our team, Audra Fleming, PSC Partners Executive Director. Audra brings a wealth of experience, profound dedication to advocacy, and a tangible impact for individuals navigating health and well-being challenges.


Energized by overcoming obstacles and driven by a genuine desire to serve others, Audra's career in the nonprofit sector has been both broad and diverse. With nearly two decades of experience, Audra has excelled as a strategic planning consultant, corporate development and donor management executive, and project manager. Her roles have seen her oversee operations, manage finances, develop programs, and lead both staff and volunteers. Audra's extensive background and passion for her work make her an integral part of the team at PSC Partners where she continues to drive meaningful change and support for those in need.


Audra and her husband live in Colorado and are proud parents of two boys. Outside of work, she loves going on outdoor adventures, traveling, watching movies, reading, and spending time with her family and friends.

Exciting News on Mirum Pharmaceuticals’ Interim Results on the VISTAS Drug Trial of Volixibat for PSC-related Itch!

Mirum is continuing with the VISTAS trial thanks to promising preliminary signals. Volixibat, well-tested for its safety, is an oral bile acid transporter inhibitor which aims to reduce itch in PSC and PBC.


Important takeaways:


*To shorten the time needed to get to final study results, the VISTAS PSC interim analysis was blinded to the sponsor and investigators and the data cannot be released at this time. For now, what is known is that the interim results are solid enough to continue the study as planned.


*To complete this Phase 2 Volixibat trial for PSC, more PSC participants are needed.


*The VISTAS trial is conducted in sites around the world. If you live in the U.S., you can opt to participate remotely. You do not need to be receiving care at a specific medical center to join this study.


Consider joining after you consult your doctor, if you are 12 and older, and are experiencing PSC itch.


View News Release Here


Vistas Study Information Here

Three Articles of Interest

Scientists Partner with Patients to Advance Rare Disease Research

Written by Rebekah Mikeasky and published in the NIH's NIDDK Directors Update


Investigators in NIDDK’s Translational Hepatology Section led by Dr. Theo Heller (above, second from right) are working together with patients in a new clinical study addressing PSC. The study aims to understand the biological causes of PSC and how the disease affects organ systems beyond the liver. “PSC is truly a devastating disease, and with this research, we have a real opportunity to make a difference,” said Heller. Read article here.

Caregiver-Reported Symptom Burden and Preferences for Therapeutic Goals in Pediatric Primary Sclerosing Cholangitis

Co-authors: Holly Payton ShifmanJoanne HatchettRuth-Anne PaiRicky SaferRachel GomelMary VyasMichael LiJennifer C. LaiSharad I. Wadhwani and published in the Journal of Pediatric Gastroenterology and Nutrition


This study analyzed qualitative and quantitative survey responses from 51 pediatric PSC patients and caregivers using the PSC Partners Patient Registry–Our Voices survey. The most common symptoms reported by children/caregivers include: fatigue (71%), abdominal pain (69%), anxiety (59%), appetite loss (51%), insomnia (49%), and pruritus (45%). Read more here.

Patient-Focused Drug Development in Primary Sclerosing Cholangitis: Insights on Patient Priorities and Involvement in Clinical Trials

Co-authors: Li, Michael; Pai, Ruth-Anne; Gomel, Rachel; Vyas, Mary; Callif, Sarah Curup; Hatchett, Joanne; Bowlus, Christopher L.; Lai, Jennifer C. and published in Hepatology Communications


Given the absence of proven disease-modifying therapies, the American Association for the Study of Liver Disease (AASLD) recommends that all patients with PSC be considered for participation in clinical trials… However, little is known regarding predictors of and barriers to clinical trial involvement from the patient's perspective. The Externally-Led Patient-Focused Drug Development (EL-PFDD) program is an FDA initiative to ensure that patient experiences, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. Read more here.

There's Still Time to Join the

Walk For a Cure!


WALK83.01 for PSC Research is in full swing. Since this fundraiser runs through July 31, 2024, there's still plenty of time for you to join and/or donate. 100% of all contributions support PSC research, and we'd love 100% participation from those in our community who are able. Whether it's $5, $50, $500, or more, your donation will make a BIG difference in the search for treatments and a cure.


In recognition of PSC Partners' 20th Anniversary, this year's goal is $120,000.

Check out these WALK videos!

Kathy Halloran reaches out from rainy Minnesota to encourage everyone to get involved in this important and FUN fundrasier!

See how a few folks in our

community kicked off their WALK83.01 for PSC Research!

Click HERE to Join and/or Donate to WALK83.01 for PSC Research


2024 PSC Partners 20th Anniversary Conference

Explore Sponsorship Opportunities and Reserve Your Room

The Conference will be held October 18-20, 2024, at the Arizona Grand Resort, approximately 10 minutes from the Phoenix, Arizona, Sky Harbor Airport. We are busy working on registration. In the meantime, check out the information below:


RESERVE YOUR ROOMS: Discounted rooms have been reserved for the 2024 PSC Partners 20th Anniversary Annual Conference. Click HERE for more information and to reserve your room. If you would like to come early or stay late, we have been able to extend our discounted rate to three days pre-conference and three days post. Visit our website for additional resort information.


As you make your travel plans, please note that Sunday morning peer group sessions are meaningful and often a community favorite. We hope you'll plan to be there. Additionally, some folks like to stay through Sunday night to join others for a casual, self-paid dinner.


CONSIDER SPONSORSHIPS: There are numerous sponsorship opportunities for the 2024 PSC Partners 20th Anniversary Annual Conference. Click HERE to download the Corporate Sponsorship Packet. A Community Sponsorship Packet will be available soon. For more information on sponsorship, email Scott@PSCPartners.org.


Watch for a draft of the Conference Agenda coming soon.


We are excited to see you all in October. To stay updated on Conference news, visit our website.

EVENTS
Upcoming ZoomRoom Virtual Support Groups
Registration Required
"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."
-- ZoomRoom Attendee
Click HERE to Register for July 9th ZoomRoom
Click HERE to Register for July 23rd ZoomRoom
Click HERE to Register for July 10th ZoomRoom
Click HERE to Register for August 12th ZoomRoom

Check out the EVENTS page on our website for more community happenings.

If you have something to add, send it to contactus@PSCPartners.org.

We will review all submissions for interest to our PSC community.

Visit David's YouTube Channel to watch all of his Appalachian Trail hike videos.

Welcome to Sandi's

Circle


Finding Love at the PSC Partners Conference

Taken from the book Sandi's Journey.


"I've been accused of overstating the amount of love in our group. I've been told that what I'm saying simply can't be true. But you know what I hear most on the subject from first-time Conference attendees? I hear that I was right. I hear their joy as they tell me they now know I wasn't overstating, selling them flowery promises with wilted stems at the core. There's simply no such thing as isolation at the Conference. From the hugs and greetings as one enters the door to the hand holding and tissue sharing in breakout groups or as we listen to sometimes dire statistics, the love is there. It bubbles out in song, stories, and shared moments. It's there in the knowledge that our loads are much lighter, because we have everyone's shoulders to share the weight. It's no longer our battle alone."

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.

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