For the past 15 years, PSC Partners Seeking a Cure has sought to be a safe haven, providing information and support, for those diagnosed with PSC and their caregivers. The non-profit organization got its start thanks to the determination of one Denver-area woman, Ricky Safer, and her family. When the lifelong health and exercise enthusiast received her shocking diagnosis, she decided to stop working as a French instructor and start the organization. Fast forward to 2019, and PSC Partners Seeking a Cure now reaches patients across the globe and has supported over $3 million in PSC research grants.
Mayo Clinic Connect recently talked with Safer, who shared the organization’s mission, the only one of its kind in the United States, the progress made, and her hopes for the upcoming 15th annual conference for PSC patients and caregivers in Rochester, Minn.
What is the mission and vision of PSC Partners Seeking a Cure?
To provide education and support to patients, families, and caregivers, and to raise funds to research causes, treatments and cures for primary sclerosing cholangitis.
How does PSC Partners Seeking a Cure promote awareness and research?
Through our website, social media presence, brochures, and annual conferences, people learn about our organization and become involved. It’s an amazing community that has arisen and is now international. Receiving a diagnosis of PSC is a very scary event; my desire was for our organization to be a place where PSC patents know we have accurate information and resources about the disease on our website and can connect with others who know what they’re going through.
We have supported over $3 million of PSC research internationally. Our Scientific Medical Advisory Committee helps us decide which grants would be the most promising for us to support. One of our first grants went to Dr. Lazaridis to study the genetics of PSC. After we gave him our seed grant, he received a multi-million dollar grant from the National Institutes of Health to follow through on his genetics research. We’ve had a wonderful relationship with Mayo throughout the years.
What should patients and caregivers know about the 2019 annual conference in Rochester, Minnesota from June 21-23?
We started the annual conferences to give people updated information on every aspect of the disease and how to cope with it for both patients and caregivers. We go to a different medical center each year and choose medical centers that specialize in PSC. The Mayo PSC clinicians and researchers are all very well-known and highly respected, and we’re very excited to be coming back. We’re expecting between 325 and 350 patients and caregiver attendees, which is a big group for a rare disease.
When people come the first time to the conference, they’re very apprehensive because they want to learn and meet other people with the disease but don’t want it to be a depressing experience. It seems counterintuitive, but we laugh, we cry, we laugh, we cry, and at the end of the weekend, there’s a wonderful feeling of hope and friendship.
We try to appeal to patients of all different ages and all different stages of the disease, plus to caregivers. The majority of attendees come with family members, so there’s a real family feeling.
We’ll have more than two dozen speakers who will talk about every medical topic that has to do with PSC and related diseases – from why clinical trials are important and how people can participate to navigating medical insurance, how to cope with PSC, how to find accurate medical information, nutrition, and a lot on research. The medical and coping sessions are on Friday and Saturday, and Sunday is reserved for our peer groups. We now have 17 different peer groups. Everyone helps each other with personal experience, we form bonds and remain really close. Once people find us it’s like home.
New this year, attendees will have the opportunity to participate in research at Mayo by providing blood and stool samples. On both Friday and Saturday of the conference, there is also plenty of time for attendees to talk one-on-one with Mayo speakers and ask them some of the questions they have. Also, if patients want to come early or stay late, they can make appointments to see Mayo specialists.
Could you tell us about your organization’s recent major accomplishments?
One of the things that has helped us expand is the relationships we’ve been able to build with these top medical centers. We have a patient registry, so we can help researchers recruit patients for clinical trials. We also have launched a podcast series to discuss various aspects of PSC with clinicians and patients.
One of our big successes in 2018 was obtaining a specific diagnosis code, called an ICD-10 code, for PSC. We spent a year working with the government agency that sets up codes and we testified in Washington, and in October of last year, a specific ICD-10 code for PSC was launched. One of our big projects for this year is an educational campaign to make sure providers throughout the country know we now have this code and code their patients accordingly. This specific PSC code (K83.01) will remove many of the current obstacles to PSC research.
We’re also in the process of expanding our mentor program for patients and caregivers, so if you would like to talk to someone else with the disease we can connect you. Throughout the years many hundreds of people have participated and those friendships last forever.
What are your organization’s plans for the future?
We are always interested in raising as much money as we can to support more research, and we are trying to expand our educational efforts throughout the country to reach more people. We’re still very much a majority volunteer organization with volunteers from all over the country and Canada, who really help keep our programs going. It’s probably the most rewarding thing I’ve ever done professionally. If you ever came to one of our conferences, you would see we are a very tenacious group and our whole attitude is, “We may have PSC, but PSC doesn’t have us.”