THE DUCT
A Monthly Newsletter for the PSC Community
March 2023
This is the first time we've ever had the opportunity to hear from leaders from the
Food and Drug Administration (FDA). Come listen and participate in the Q and A!
Invitation for the Rare Disease Community
Please Join this Webinar!
Are we truly engaging everyone affected by rare diseases?

Attendees of this important webinar will hear from representatives of the Food and Drug Administration (FDA) who will discuss the importance of increasing diversity in clinical trials for rare diseases.

Webinar participants will include:
Rare Disease Patients
Caregivers
Rare Disease Patient Advocates
Medical Providers
Industry Representatives, and more.

People who attend this important virtual event are encouraged to ask questions.
Everyone is welcome to participate!
Please help us spread the word about this timely, important webinar. 
Thank you! See you there.
Do You Experience Symptoms Related to Your PSC and
Want to Help Advance PSC Research?
If so, you may be eligible to participate in a research study to help researchers learn more about PSC symptoms and develop patient-reported symptom measures. This critical project is funded by PSC Partners Seeking a Cure.
 
You may be eligible if you:
  • Are 18 years of age or older
  • Speak English
  • Have been diagnosed with PSC by your liver doctor
  • Have experienced symptoms related to PSC in the past 5 years
  • Are not wait-listed for liver transplant or have not received a liver transplant

PLEASE CONTACT US TO LEARN MORE ABOUT THIS IMPORTANT STUDY
 
Kaya Merkler
Phone: 919-966-3782
Dr. Donna Evon
Phone: (919) 966-6732
 
Study Title: Development or Modification of a New Patient-Reported Outcome Symptom Measure for Adults with Primary Sclerosing Cholangitis (PSC)

Principal Investigator: Dr. Donna Evon, PhD, donna_evon@med.unc.edu

Institution: The University of North Carolina at Chapel Hill (IRB Study # 22-2477).
Phone: 919-966-3113; Email: IRB_subjects@unc.edu.

Study Sponsor: PSC Partners Seeking A Cure

This is a research study, not treatment for PSC.

Participation in this study may last 30-90 minutes and include 1 or 2 phone interviews. Participants who complete a qualitative interview, in addition to undergoing screening, will be reimbursed with a $30 Visa gift card for their time.
Meet our Newest Board Member Scott Malat
Scott Malat, CFA, and previous member of our board of directors, has returned to offer his time and expertise to PSC Partners for another term. He says he attended his first PSC Partners Conference looking for more information after his wife was diagnosed in 2005. At that Conference, he says he was amazed to find such a talented, dedicated group of volunteers that immediately treated him like family. Scott joined the board of directors to help the organization manage its explosive growth and invest in finding a cure. 

He previously served as the chief strategy officer of XPO Logistics. Prior to XPO, Scott worked at Goldman Sachs, UBS, and JP Morgan Chase. Scott is a CFA® charterholder and has a degree in statistics with a concentration in business management from Cornell University.  

Welcome aboard, Scott. Great to have you back!
Upcoming RARE Events for Our Community
Join a Peer-to-Peer ZoomRoom to Chat with
Others Who Truly Understand
Attention Parents! Check out this exciting new, fun opportunity for
kids and teens with PSC and IBD.
If you have an event you think would be of interest to our community, please let us know.
If it complies with our guidelines, we will include it on the EVENTS page of our website.
Send event information to contactus@pscpartners.org.
We care about your privacy.
Here are a few steps to take when an individual or company asks about your health information.
Sign Up for Our Information Round Up
Every month, we round up six bits of news we think will be of interest to our community and put them together in our Information Round Up email document. Folks who follow us on social media already know about this fun, educational piece, but did you know you can also have it sent directly to your inbox?

For those who are already on our email mailing list, click "Update Profile" at the very bottom of this email, and add yourself to the MONTHLY ROUND UP list. You can also email us at contactus@pscpartners.org, and we'll add you to the list.

Round Up is also posted on our Facebook, LinkedIn, and Twitter social media pages. Follow us!
Check Out the Recording of Our Most Recent Webinar
Three Perspectives in PSC Care: A Fireside Chat
Moderator: Dan Pratt, MD, Massachusetts General Hospital
Presenters:
Dennis Black, MD, University of Tennessee Health Science Center
Gideon Hirschfield, B Chir, MRCP, PhD, Professor of Medicine, University of Toronto
Cynthia Levy, MD, Professor of Medicine, University of Miami


Welcome to Sandi's
Circle

Sandi Pearlman Reflects Upon Her PSC Diagnosis
In her book Sandi's Journey, Sandi often reflected upon her life and shared her thoughts with others in the community. On the eve of her 33rd birthday, she shared her feelings about her PSC diagnosis in an article posted in a 2009 edition of The Duct. An edited excerpt is below.

"(Hours away from my birthday), I sit at home on my couch and find myself reflecting. To look at me, I look like an average girl, perhaps too thin, maybe in need of a haircut, but rather unremarkable all the same. No one would ever look at me and think, well, that girl there is fighting an incurable disease.

My counselor asked me what was the best thing that ever happened to me. I responded that it probably hasn't happened, yet. She frowned and asked me, well, what's 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.

See, she couldn't understand why I wouldn't say PSC was the worst thing that ever happened to me. Don't get me wrong, PSC sucks. But the fact is, in some ways, PSC is both one of the best and one of the worst things in my life. PSC gives us an edge. We're not like the dude on the couch in the lounge somewhere thinking he has an unlimited lifetime to make choices and say sorry and make love and dream dreams. We know life is precious. It's ours for this day, and, hopefully, for the next, and, damn, if we're going to waste it."

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.
AmazonSmile May Be Gone, but You Can Still Support PSC Partners with Your Online Shopping

While we were all sad to see AmazonSmile close at the end of February, there are many other ways you can raise money for PSC Partners just by doing your regular online shopping!

Check out iGive – An easy and secure way to give back, iGive is an online charitable mall that donates a portion of your purchases back to PSC Partners. To get started, visit iGive.com/pscpartners. There are no administrative costs or fees, and PSC Partners will receive 100% of the donation!

You can also raise funds for PSC Partners through other shopping sites like:

Thank you so much for your support!
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