Road to a Cure Pedal for PSC

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PSC Partners

PSC Partners Seeking a Cure

PSC Partners

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 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 organization. The mission of PSC Partners Seeking a Cure is to provide education and support to PSC patients, families and caregivers and to raise funds to research causes, treatments and cures for primary sclerosing cholangitis.

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 to provide PSC patients, caregivers, physicians, and researchers with easy access to a vast body of information concerning PSC and associated diseases. Start with the FAQ section and then explore the scientific literature in detail.

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. Past conference PowerPoint presentations are available to review. To read summaries of past conference presentations, please visit our newsletter page.

Local/Regional Conferences: We have also started holding local forums for PSC patients and caregivers. For more information, please read about the PSC Forum held at Mount Sinai Hospital in September, 2009 and 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: Learn about local support groups that are starting throughout the country.

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

 

 

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

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

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.

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

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.

 


Personal Stories

“Having someone in your corner”

John Crowley, PSC Patient, relates his story of being diagnosed and finding PSC Partners, while Dr. Chris Bowlus desribes the basics of PSC and the work of the PSC Partners organization in this short video produced by Chris Bailboni. Click the image below to watch the video. (1:23)

JCVideoFrame

“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 webpage. There is a lot of information out there, but PSC Partners 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 organization 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 well-being, 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, Former Chairman, PSC-Support (UK)