THE DUCT
A Monthly Newsletter for the PSC Community
May 2023
Registration Open for Third Annual WALK83.01 for PSC
This year's goal is $135,000 for PSC research. We need everyone's participation to reach our goal. This FUN fundraiser runs June 1-July 31, 2023.
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 June 1-July 31, 2023. You can also complete this event in another way, like biking, swimming, reading, playing suduko, or doing something else you find enjoyable and doable.

This is the third year of this FUN fundraiser, which has raised more than $200,000 since it kicked off in 2021. This year's goal is $135,000. 100% of all WALK83.01 for PSC donations support PSC research.

Click the photos below to connect to videos of Board Members Kathy Halloran and
Mahesh Krishna explaining why we need YOU to participate in this FUN fundraiser.
Click HERE to visit our WALK83.01 Resources page for fundraising tips & tricks, ideas about how to complete this race, ways to spread awareness, and more.

Click HERE to visit our online shop to pick up WALK83.01 for PSC apparel and other PSC Partners branded gear to look snazzy and raise awareness while you're out and about participating in this event.

Together, we are creating a world where a PSC diagnosis comes with a cure,
but we can't do it without YOU!
Save the Date for the 2023 PSC Partners Annual Patient and Caregiver Conference, Sept. 8-10!

We hope you'll consider joining us as our community gathers once again in person after three years apart! We are planning three days of educational sessions presented by international PSC experts, peer-to-peer supportive gatherings, social engagements, and much more. A detailed agenda, links to hotels and registration, and more information will be available soon.

Check the Conference page on our website for updated information. Below, we address the masking protocol.

Click HERE to visit our online shop to purchase some PSC Partners gear in preparation for the Conference. There will also be a shop onsite at the Conference venue.
Masking and Social Distancing Protocol at the
Annual Patient and Caregiver Conference
The health and safety of those who are immunocompromised in our community is of the utmost importance to us. To help people make a choice that is best for them, we are providing the following details.

While we will strongly recommend the wearing of masks at our Conference, masks will not be required. The Conference hotel does not require masks, and we cannot guarantee that masks will be worn. If you’re not feeling well, please consider not attending. We’ll miss you, but we want to keep everyone comfortable. All group meals will be held outside. Additionally, PSC Partners will provide sanitizing stations and free masks throughout the Conference venue. Depending on updates to CDC, World Health Organization, or the state guidelines, PSC Partners protocol may be subject to change.
 
Before attending, each person should evaluate the risks associated with traveling to and from the Conference and attending an in-person event.
To help attendees easily communicate their level of comfort interacting with one another,
coded stickers will be available to all on-site attendees to display on their name badges.
We borrowed this great idea from Global Genes. :-)
Have ideas or questions about the 2023 Conference?
We'd love to hear from you. Visit the 2023 Annual Conference page on our website, and fill out the form at the bottom of the page. You can also reach out via email, contactus@pscpartners.org, or call 303-771-5227.
PSC Partners Research Efforts Explained
Through various avenues, PSC Partners is working with researchers, medical providers, industry, other rare disease organizations, people with PSC, and more to put the pieces together in search of treatments and a cure for primary sclerosing cholangitis (PSC). Below is information about many of our current science-focused endeavors and our plans for the future.

PSC Partners Patient Registry: The PSC Partners Patient Registry is a patient-driven and patient-reported secure database that stores information about those affected by PSC. Its aim is to add the patient’s voice to every facet of PSC research while facilitating clinical trials to speed up PSC research towards treatments and a cure. Please join the Patient Registry.

ICRNetwork: The International Collaborative Research Network (ICRNetwork) is a PSC Partners-driven collaboration with patients, caregivers, researchers, medical providers, regulators, industry partners, and more. Through ICRNetwork, the patient voice is championed as we work with partners around the world to spark collaboration and facilitate patient-driven research projects and patient-focused drug development.
SRP: The Strategic Research Plan (SRP) informs PSC Partners’ specific patient-driven research projects over the next five years and beyond with a goal of finding treatments and a cure for PSC.

PROM-PSC: PSC Partners Patient Reported Outcome Measure (PROM) Project will develop PSC-specific tools to scientifically capture how a person with PSC feels and functions. PROM-PSC seeks to integrate PSC patients’ voices and symptom experiences into clinical trials.

WIND-PSC: Worldwide Integration of Natural History Databases - Propelling Successful Clinical Trials (WIND-PSC) aims to rigorously collect standardized clinical and patient-reported data on 2000 PSC patients over five years from numerous research sites and multiple countries. This natural history study reflects what inherently happens to individual PSC patients over a period time.

PSC Partners Grants Program: Through our Grants Program, PSC Partners and affiliate PSC Partners Canada offer two-year seed grants to conduct research that addresses an important and novel, basic, or clinical research question related to PSC and closely associated diseases (such as inflammatory bowel diseases [IBD] and cholangiocarcinoma). The funding total to date is more than $6 million.
Together, we are creating a world where a PSC diagnosis comes with a cure!
When Your Husband is Your Living Liver Donor:
A Conversation with Jessica and Ian Travis
In episode 38 of the Living with PSC Podcast, Host Niall McKay has an illuminating conversation with Jessica and Ian Travis about Jessica's journey with PSC, her search for a liver, and how her husband Ian became her live donor.

"I had alot of issues when I was first listed (for a liver transplant). I was having alot of panic attacks. I couldn't figure out why I was having them. I think alot of it was not having control over the situation," says Jessica.

According to the couple, their story involves lots of assistance and kindness from others along the way.
"You think you have to do this alone," says Jessica. "What you don't realize it that there's actually alot of people around who can help. You just have to ask for it, and that's a really hard thing to do."

Jessica's path to transplant was complicated ending with her husband secretly getting tested to be her donor, which she discovered while viewing a message on their shared online medical portal.

"I said (to Ian), 'So, you applied? When were you planning on telling me?' (He responded) Today," Jessica recounts to Niall with a giggle.

"Post-transplant, I have my wife back," says Ian.


For more information about Jessica and Ian's journey,
including their revealing social media posts, Click HERE.
Welcome Our Newest Board Member Mahesh Krishna
We are excited to welcome our new Board Member Mahesh Krishna. Mahesh was diagnosed with PSC when he was 15 years old. As a kid, he says it was difficult for him to learn that he had this incurable, progressive, chronic disease that would eventually lead to a liver transplant. He felt uncertain and unsure about what the future would hold. He says that PSC Partners was a vital resource for him during those first few years in helping him feel like he could live a full life with PSC. 

Mahesh has been to several PSC Partners conferences with his dad and has loved being part of the welcoming community. He has volunteered for PSC Partners as a writer about his experience and about the latest scientific literature on PSC, as a moderator for his peer group, as a mentor to new conference attendees, and as part of the research committee. He genuinely believes that PSC Partners will make a difference in helping find a cure.

Mahesh is currently a third-year medical student at Johns Hopkins University School of Medicine and hopes to find an effective therapy in the future so that no other kid has to feel like he did when he was first diagnosed. In his spare time, he enjoys playing basketball and chess, rooting for Philly sports teams, and playing with his pets.
Upcoming RARE Events for Our Community
Join a Peer-to-Peer ZoomRoom to Chat with
Others Who Truly Understand
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.
May is Mental Health Awareness Month
Check out PSC Partners Offerings
In addition to all of the physical issues that impact those with PSC, there are also lots of mental challenges like anxiety, depression, and fear. During Mental Health Awareness Month, we want to make sure our community is aware of some of the ways we try to help those with PSC as well as their caregivers, friends, and family members.

  • MENTOR PROGRM: Whether you're a PSC patient, parent, spouse, caregiver, or another member of the PSC community, a mentor can be a great source of peer-to-peer support. If you are in need of a mentor or would like to volunteer to be a mentor for someone in the community, visit the Mentor page on our website for more information and to complete the interest form.

  • ZOOMROOMS: Our virtual peer group ZoomRoom meetings provide a safe place for folks to speak with others who truly understand. Whether you are a person with PSC, post-transplant, caregiver, spouse, parent, or are carrying on the spirit for someone who has passed, we have a ZoomRoom for you. Visit the EVENTS page on our website for more information.

  • CONFERENCE PEER GROUPS: At our Annual Conference, we provide time for folks to meet in person with others in their peer group. It's a great time to share stories, give updates, offer and receive support, and sometimes even laugh. Get more information on the 2023 Annual Conference page of our website. When registration is open, there will be a spot to sign up for the appropriate peer group, including a special group just for teens!

  • FACEBOOK PAGES: Patients and caregivers are encouraged to join our closed and open support pages on Facebook. On these pages, folks share information and stories and offer support for one another.



Welcome to Sandi's
Circle

Sandi Pearlman Considered Herself a
PSC Warrior and Educator
In her book Sandi's Journey, which is available on Amazon, Sandi talks about how she found strength and hope in educating people about her rare disease.

"I am no longer who I used to be...But I'm a warrior.

I'm a fighter and an educator. I'm unafraid to say I have PSC or take the time to explain to a physician or a bystander what it is. I shout my differences in the name of education and awareness.

I teach others not to judge by sight alone. I teach them to listen and help them find compassion and to want to cure me, to cure those like me.

I show those with my disease that they are not alone and that we're in this together. I am not a victim. I'm a survivor. And if my disease takes me tomorrow, it will be on my terms and because I've taught what I've needed to teach and I've said what needed to be said. It will be because my body can no longer take being 'other,' finding itself inflicted with a disease that very few know and that its resources cannot fight off. It will be because my soul has more work to do than my tired physique can support.

And yet, should that happen, I won't cease to exist. Who I was, what I did, those questions may still be asked. The answers? My answers? More researchers and doctors and civilians will know the name PSC and will realize there is a war to win than before I came...The journey continues."

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.
Use Our New Tool to Discover if
You Can Double Your Donation

Did you know that more than 26 million people work for companies with employee matching gift programs? Perhaps your employer is one of these generous companies. Some companies even match gifts from spouses and retirees. Use the Double the Donation search box on our website to see if your company will match your donation!

You may have to submit some forms, and we are happy to help you through the matching process. Email fundraising@pscpartners.org, or call 303-771-5227.
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