The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease.
Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization. The various programs give support to patients, caregivers, families, and friends, educate patients and the medical community about PSC, and encourage ground-breaking research in the search for a cure.
By Ricky Safer, CEO, PSC Partners Seeking a Cure
The Beginning: 2003
Lapsing back into consciousness, I struggled to remember where I was. My mind felt like cotton: my throat felt battered, and I sensed strange pains everywhere. I opened my eyes to see the forced smile of my always-positive husband and the sad eyes of the rest of my family. “She’s up!” my husband uttered in a voice that was trying too hard. I realized from afar that the ERCP I had dreaded was completed.
In my medicated state, all that I could decipher from the doctor’s update was, “Ricky, you have PSC.” I closed my eyes again, and each time I reopened them, my family was still there. I kept asking the doctor the same questions over and over in my slurred voice. “Is there anything you can do for me?” He answered: “We can try to continue treating the symptoms, but there is no cure. ”And then, again and again I muttered: “Where can I find more information on PSC? A support group?” His answer: “There is little available.”
As a person who had been a health and fitness fanatic my whole life, this sudden shocking change in my lifestyle and future was a rude awakening. Like all my fellow PSCers, this diagnosis threw me into an emotional tailspin. I was suddenly dealing with anxiety, fear of the unknown, anger, worry about my family, and a host of other emotions. The start of my journey with PSC was so lonely and confusing. I’m extremely lucky to have a loyal and loving group of family, friends, and colleagues who support me, but it wasn’t enough this time.
I craved two things: more accurate information to fight this dreaded disease and the support and wisdom of other PSCers who could guide me on this somewhat terrifying journey. When I finally discovered the Yahoo support group online, where I connected with a group of incredibly knowledgeable, compassionate, and supportive PSC patients and caregivers, I knew that my journey had taken a turn for the best. Now, it was time to be proactive!
Talking to other PSCers online made me realize that we all shared the same concerns, anxiety, and frustration at the lack of available education and support and the dearth of PSC research internationally.
My family and I talked constantly and finally decided that we could do something to try to make life better for PSCers and stimulate research to find that elusive cure for PSC.
From the online group, I enlisted the help of David Rhodes and Lee Bria, who offered great advice and direction. David had already started his invaluable literature site, and we were all able to join forces to get things off the ground. My daughter Elissa volunteered her time and expertise to complete all the legal work needed to set us up as a functioning nonprofit organization. My husband, Don, was my lead spokesman, chief advisor, and ardent supporter. Dr. Greg Everson, of the University of Colorado Health Sciences Center, immediately joined us in this challenge and worked diligently with us to organize our first conference four months later for PSCers and caregivers in April 2005.
Once we launched PSC Partners Seeking a Cure in January 2005 and held our first conference, attended by 84 enthusiastic supporters, we were well on our way to success.
"My sister 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."
Today, PSC Partners Seeking a Cure is continually expanding our programs, thanks to the expertise, advice, and help from our talented board of directors, Scientific/Medical Advisory Committee (SMAC), and our amazing community. We remain a true working partnership between PSC patients, caregivers, physicians, nurses, nutritionists, pharmacists, and researchers. Together, we form a unique community that acts as a family for PSCers and caregivers, and offers hope to all of us. Since inception, we’ve raised nearly $4 million for research into the disease, and we’re still going strong. Together, we WILL find a cure for PSC!
Together in the fight, whatever it takes.
"Along with a great catalog of information, here are real live people I can communicate with, ask questions of, and relate to. We share ideas, treatments, and frustrations. I may have PSC, but I no longer feel isolated."
Patient Conferences: Since 2005, PSC Partners has 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 while sharing experiences, advice, and concerns with other PSCers. Past conference presentation videos and slides are available to review. To read summaries of past conference presentations, please visit our archived newsletters. Click here to find out why you should attend a PSC Partners Conference. Click here for more information about the upcoming conference.
Research Grants: We award research grants to prominent PSC researchers annually through our competitive grant program. The members of our Scientific/Medical Advisory Committee (SMAC) are actively engaged in deciding where to allocate our funds for PSC research. Click here for further information about past and future grants.
The PSC Literature Site, 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.
Download our educational brochures, which provide basic information about PSC:
To request brochures free-of-charge to furnish to physicians’ offices in your area, please contact us at firstname.lastname@example.org.
Our monthly electronic newsletter, The Duct, features updates about the PSC community, progress in research, and other timely news about PSC. Please join our mailing list to receive The Duct. Archived editions of earlier versions of The Duct magazine are available here.
We are glad to have you join the PSC Partners family. As PSCers, caregivers, healthcare professionals, and researchers working together, we are making significant progress in solving the mysteries of PSC. Join us in the fight. Let’s provide hope for the future.
“I am more optimistic than I have ever been about the future prospects of caring for people with PSC.” -- Dr. John Eaton, MD, Mayo Clinic
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