About PSC Partners

We are working together to provide research, education, and support for people affected by primary sclerosing cholangitis.

PSC Partners Seeking a Cure is a grassroots volunteer organization that was formed in 2005 to provide primary sclerosing cholangitis (PSC) patients and their caregivers education and support and to raise funds to research the origins and a cure for the disease.

PSC Partners Seeking a Cure is a 501(c)3 nonprofit foundation whose mission is to:

• Provide education and support to PSC patients and their families
• Raise funds with which to research the causes and a cure for PSC
• Promote PSC and organ donation awareness

In trying to reach our goals, we have started many programs and we have others in development:

The PSC Literature Site: The PSC Literature Site, which was developed in 2004 by David and Judith Rhodes, is the premier and most extensive website for information on PSC and continues to be updated weekly to provide PSC patients, caregivers, physicians, and researchers with easy access to a vast body of information concerning PSC and allied diseases. Start with the FAQ section and then explore the scientific literature in detail. Click here to visit the literature site.

Thank you to David and Judy R. for keeping us updated about the most recent PSC research being done worldwide.

Patient Conferences: Since 2005 we have held annual patient conferences for PSC patients and caregivers at different medical centers throughout the country. These weekend conferences offer a wonderful opportunity to learn about the most recent advances in PSC treatments and research and also to share experiences, advice, and concerns with other PSCers. To view past conference PowerPoint presentations, click here To read summaries of past conference presentations, click here to go to our newsletter page.

Thank you to our conference co-chairs: Joanne G., Karen B., Becky L. and Reggie and Jeff B. and to all our conference volunteers who are too numerous to mention.

Local/Regional Conferences: We have also started holding local forums for PSC patients and caregivers. To read about them, click here to learn about the PSC Forum held at Mount Sinai Hospital in September, 2009 and click here to learn about the presentations at the PSC-IBD Symposium held at the University of Colorado Health Sciences Center in October, 2009.

Thank you to Eileen S., Dr. Joseph Odin and their colleagues at Mount Sinai who gave presentations and to Carol R., Dr. Sean Colgan, and their colleagues at the University of Colorado Denver who shared their knowledge with us.

Local Support Groups: To learn about local support groups that are starting throughout the country, please click here for an updated list of groups.

Thank you to Reggie B., Jennifer S., Carolyn B., Eileen S., Tom H. and Ellen and Chaim B. who run our local support groups.

Our Newsletter, The Duct: We publish a free online newsletter with updates about the latest treatments, research results, and coping suggestions. Use the form on the top left to join our mailing list in order to receive a notice of each newsletter edition when it becomes available.

To sign up to receive alerts when a new issue is available, click here.

Thank you to David R., who was editor of our newsletter from its inception until 2008 and to Pat B., who has been editor of The Duct since summer 2008.

Sandi Pearlman has been our special columnist for 20s-30s readers.

Our Website: Thanks to a generous grant from the Cordis Corporation, we have been able to expand and improve our website. We have tried to personalize this site by including advice and personal stories from our members, so that we can offer valuable everyday living suggestions to PSCers in addition to updates on treatments and medical research.

To sign up for alerts of PSC Partners news, click here.

Thank you to two very talented women, Pat B. and Shelley H., who have volunteered their time, creativity and professional expertise for over a year to help us plan, organize, write and edit the new website material. Pat B. has been the heart and soul of this project. Thank you to Arne M. for his editing help, and to all our PSCers and caregivers who have written valuable articles for us: Sandi P., Ivor S., Arne M., Brenda F., Melanie S., Peter and Helena H., Rachel G., Beth D., Eve J., Denise B., Joanne H., Shelley H., Reggie and Jeff B., Becky L., Joanne G., Barb H., Caroline P., Carl, and Pattie H.

Thank you to David R., who has been our webmaster since 2005, and to Arne M. who is our new webmaster, aided by Fred S. and Scott M.

A special thank you to web designers Dan O’Donnell and Mike Kuzin of Direct Axis Creative who have made our plans a reality.

Educational Brochures: We have created brochures that provide basic information about PSC:

• Living with PSC 
• Diagnosing PSC 
• PSC Medications 
• A brochure on Pediatric PSC is under development

Click here to download the brochures. To order brochures to hand out to physicians in your area write to brochures@pscpartners.org. Some members offer the brochures for waiting room reading material.

Thank you to David R. for preparing the text for our brochures, to Shelley H., Sandi P., Denise B., Pat B., Arne M., and Dr. Gregory Everson for editing them, and to Sue S. for doing the graphic design work. Thank you to Laurie S.. for being in charge of mailing out all brochure requests.

Research Grants: The members of our Scientific/Medical Advisory Board are actively engaged in deciding where to allocate our funds for PSC research. Through our competitive program, we have awarded research grants to prominent PSC researchers. Click here for further information about past and future grants.

Because we are a volunteer foundation, we're able to keep our administrative costs amazingly low: just 2.4 percent in 2009. Nearly 98 percent of all donations and sponsorships go directly to PSC research grants and educational programs.

Your donations to help support our programs are always gratefully appreciated.

Thank you to our Scientific/Medical Advisory Committee members, who analyze and select the research proposals for us to fund:  Dr. David Rhodes, Chair, Dr. Dennis Black,  Dr. Christopher Bowlus, Dr. Kapil Chopra, Dr. Steven Deitch, Dr. Gregory Everson, Dr. Aubrey Goldstein, Dr. Richard Green, Dr. Denise Harnois, Dr. Gideon Hirschfield, Dr. Johannes Hov, Dr. Keith Lindor, Dr. Stephen Miller and Dr. Don Safer.

The PSC Partners Family: We are glad to have you join our PSC Partners family. As PSCers, caregivers, health care professionals and researchers working together, we are making significant progress in solving the mysteries of PSC. We have created programs for education and support, made inroads in the medical and research community and expanded our research funding. Join us in the fight. Let's provide hope for the future.

To sign up for alerts of PSC Partners news, click here.

Due to space constraints and our long list of dedicated volunteers, it’s not possible to thank everyone individually, but we greatly appreciate your commitment and willingness to help.

Personal Stories

“A sense of hope and strength...” 

In June of 2005, my twin sister, Nicola, was diagnosed with PSC. I spent hours researching on the internet, and was comforted when I found the PSC Partners Foundation. There is a lot of information out there, but the foundation has everything you need. You can read about the latest research being done to find a cure, connect with other people, share stories or concerns, and get the strength you need to cope. Personally, I look forward to the annual conference. While intense and sometimes scary, it is comforting to meet other patients/caregivers/partners/doctors. It helps me remember that my family and I are not alone in this fight. This foundation gives everyone battling PSC a sense of hope and strength . . . thank you for all you do!

Caroline P.

“...a lifeline...”

PSC/Partners Seeking a Cure is a lifeline that came during our darkest moments. Our 19-year-old son had been through four challenging years of high school, feeling that no one else in the world could understand his path or pain. When we discovered PSC Partners Seeking a Cure, the world literally came to him. At the 2008 Jacksonville conference he was eagerly embraced by everyone, educated more thoroughly by experts from around the world, and empowered to make a difference for others with the disease. For his senior project, he created a Power Point presentation on PSC that was well received by students and faculty. He is currently in college, where his influence has encouraged his dormitory council to donate a portion of their funds to PSC research. It is a joy to have our son "back," choosing to have a life of determination rather than doom. We have so many Partners to thank for helping make that a reality.

Pattie H.

“A utopia...”

A utopia, an ideal, imaginary society: Can there be a community in which all its members unconditionally care for one another's wellbeing, feel someone else's pain, surface by the dozens out of nowhere to help someone in need, are bound to each other with an important mission, and are fiercely resolved to find a solution, together in the fight, whatever it takes? Well, this is what PSC Partners has come to mean to me. Though I do not know most of its members, this virtual village teems with people I have grown to love. They are like my secret friends, my hidden world that no one else around me can enter or comprehend. This is where my deepest fears are echoed, appeased, and at times, even eradicated. To me, PSC Partners is the spirit of so many people who are taking us closer to the cure and embodies what the world should be like. Thank you to each one of you for making it so beautiful.

Rachel G.

“I felt all alone...”

When I was first diagnosed with PSC, I felt all alone in the world. I had a rare disease that very few of my doctors had even heard about, let alone seen. It was scary and some of the information out there on the web just made things worse. Then, I found PSC Partners and things started to turn around. Along with a great catalog of information, here were real live people I could communicate with, ask questions of, and relate to. We share ideas, treatments, and frustrations. I may have PSC, but I no longer feel isolated. Additionally, after attending the PSC conference, I made real connections, real friends, and gained a level of confidence that I like others, could live with this disease rather than just die from it. PSC Partners has been invaluable in alleviating what could easily be one of the most isolating and frustrating times in both my and my family's lives. Thank you, PSC Partners!

Sandi P.

“. . . best patient support group . . .”

This is without question the best patient support group for any rare disease, on two levels.

Firstly, the PSC-Support Forum is indispensable for anyone who has PSC and their caregivers, those who want to understand fully their illness and get advice. More than half a dozen highly knowledgeable and experienced members give us all the benefit of their wisdom.

Secondly, Don and Ricky Safer and several others organize an outstanding annual weekend conference in the spring which gets ever more efficient and imaginative after each meeting. Most importantly, they have the connections and co-operation of many of the world's leading hepatologists, gastroenterologists, and other specialists involved in the research and treatment of PSC and other cholestatic liver diseases as well as inflammatory bowel diseases from which most of us suffer. These weekend conferences are truly memorable. Patients meet each other and friendships are made and treatments and experiences swapped. These are great learning opportunities.

Ivor Sweigler, Chairman, PSC-Support (UK)