Dear Supporters
When I started this petition on August 4, 2020, I had no idea it would generate so many responses; almost 8500 signatures and comments both on the petition and on the UNOS website. Thanks to you, we are making amazing progress which could help thousands of people with PSC and PBC waiting for a liver transplant. Metrics matter!
Here are a few things to share:
1. On December 23rd, 2019, I received an email from Matt Cafarella, Policy Analyst for UNOS, responsible for supporting the OPTN Liver Committee. I reached out to members of UNOS letting them know that my husband finally received his liver transplant at Mayo Clinic on Sept 10, 2020. I also wanted to share this important article in the American Journal of Transplantation centered around this very petition. He writes:
"First and foremost, I am so glad to hear that Rob received a transplant and is doing well. I also want to let you know that the Liver Committee plans to propose changes to the guidance for the NLRB that would make it less restrictive for candidates with PSC to receive a MELD exception score. The public comment period for the proposed change is slated to begin on January 21, 2021. We are still putting together the supporting materials for the proposed changes. We will be sure to pass along more info as soon as it is available."
THIS IS HUGE! Please mark your calenders. Just as we flooded the public comment section of UNOS before, it is even more important that we continue to tell our stories in an effort to reduce the wait times for PSC and PBC patients whose livers are often "sicker" than their MELD scores indicate. There will be evidence to support and oppose this change and we need to continue to make our voices heard.
2. Over the course of eight months, while being a caregiver to my husband, waiting and pushing for his liver transplant, I wrote a manuscript entitled Second Chance Stories of which I am now seeking publication. My memoir not only depicts our personal journey towards liver transplant, but also includes accounts of other transplant recipients from the Mayo Clinic Second Chance Support Group who shared their inspirational stories of surviving and thriving after transplant. I consider all of you part of my audience, so thank you.
3. Whether or not we decide to start our non-profit to advocate for organ donation and transplantation through storytelling is unclear. I definitely want to make my passion my profession, however, time will reveal the best course of action to do this. In the meantime, I have spent time creating an integrated digital media platform around Second Chance Stories - website, YouTube channel, Facebook, Twitter, and Instagram page, all in an effort to reach pre and post transplant patients and interested parties. All of this can be accessed through our website. Thank you for subscribing, liking, and interracting through these digital platforms. We love hearing from you. You keep us going!
Future endeavors include blogs and zoom meetings.
Please visit, and register your name and email at the beginning.
SECOND CHANCE STORIES WEBSITE