PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast will explore the latest research and knowledge about PSC. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
In the 12th episode of Living with PSC, Niall McKay discusses living donor liver transplants and PSC with John Crowley, whose brother was his living donor.
Dear PSC Community,
We are excited to announce the launch of our Annual Giving Campaign! PSC Partners’ annual giving campaign is a vital part of keeping the important work we do moving forward. Your support is critical for continuing the momentum that has been building the last couple of years.
As I look back on our first fourteen years as an organization, I am thrilled to see the huge increase of interest in solving the mystery of PSC and the number of valuable collaborations that are being created. We knew from the start that to make our voices heard in the medical world and among PSC patients and their families, we would need to connect with the major centers treating PSC patients. Our vision was to create both a strong medical network and an engaged patient community and to encourage collaboration between the two groups.
This year has been particularly exciting for our community. It is wonderful to see researchers sharing data internationally, which will speed up the pace of research. One of the outcomes of the 2016 FDA/AASLD workshop on Trial Design and Endpoints for Clinical Trials, where I met Dr. Veronica Miller, Executive Director of the Forum for Collaborative Research, was the launch of the PSC Forum at this year’s EASL meeting in Amsterdam. Additionally, there are a number of ongoing early phase clinical trials and registries to help motivate research, and we are beginning to have a better understanding of the pathophysiology of PSC.
There is no question that interest in solving the “black box” of PSC is gaining momentum across stakeholder lines. The creation of the PSC Forum and our integral involvement with this group is giving us much to be optimistic about. However, there is much work to be done to meet our community’s unmet needs. The good news is that we now have the attention of all the right stakeholders including: researchers, clinicians, pharmaceuticals and regulators. Now, more than ever, we need your continued support to maintain our momentum and find a cure!
Over the next month, we will be sharing information and asking for your support to ensure we can continue to provide education and support for patients and caregivers, grow our patient registry and fund the research that is so critical to finding better treatments and a cure. To kick off the season, we’ve created an annual giving page where you can learn more about our accomplishments this year, where we’re headed and how you can support our continued success.
Our success lies in our community’s ability to not only donate to keep our momentum going, but also to spread the word.
We are optimistic about a future with better treatments for primary sclerosing cholangitis and thank you in advance for your support!
Founder and CEO