On Monday, October 2nd, 2023, I joined four other Florida resident advocates from the Global Liver Institute (GLI) to speak to representatives from both the United States House and Senate. Yes! We now live in St. Augustine, FL which is near my husband's transplant center, the Mayo Clinic in Jacksonville, FL.
Along with about 50 other liver transplant patients and caregivers from other States, we were invited to participate in a three day Advanced Advocacy Academy (A3) conference hosted and funded by GLI and their sponsors. Our goal was simply to tell our stories of how liver disease has impacted our lives. We used our voices to affect positive legislative changes. This gave me confidence and inspiration. Frankly, the whole weekend was one of the most powerful and impactful experiences of my life.
After navigating the maze of both the organ transplant system combined with the ever-changing limitations of health insurance, I have felt a calling to become a transplant advocate. Many of the questions people ask during pre-transplant were the same ones I had which is what led me to write the book, Saved by a Stranger. I brought copies and gave them to many of the attendees and government representatives. Storytelling is one of the most important ways to connect and help others understand our perspective. Ultimately, sharing our transplant story has also helped me obtain a "seat at the table" and for this, I am truly grateful. I began to realize that everything breaks down to systems. If you want to change the system, you must first understand it. Also, you can't do anything big by yourself. I wanted to find a group of people as passionate as I was. Connecting with like-minded folks who have gone through similar and different health challenges was incredibly rewarding.
Last year, when I was watching the Congressional hearings regarding reforming our nation's Organ Transplant system, I listened to an articulate, passionate woman named Donna Cryer, who is the Founder and CEO of GLI. Donna had her life-saving liver transplant 29 years ago and has dedicated her life since then to helping others. After doing more research, I was impressed at how this organization was accomplishing real changes in the world. The GLI team has been in the trenches analyzing and exposing problems within various Organ Procurement Organizations which I did not realize. They were influential in helping pass the bipartisan sponsored U.S Organ Procurement and Transplantation Network Act which was signed into law by President Biden on Friday, September 22nd, 2023. There is a fabulous picture of Donna Cryer smiling and standing in the Oval Office during the signing wearing her signature burgundy color.
OTHER LINKS:
1. Many of the other attendees I met have started their own Non-profit organizations. Another powerful "Donna" is Donna Benevides. She and I walked the halls of Congress together, listening to each other's stories. At 33 weeks during her first pregnancy, she began itching terribly. Doctors did not diagnose her condition soon enough and her baby died in utero from Intrahepatic Cholestasis of Pregnancy (ICP). She was able to take proper precautions during her next pregnancies and went on to have two healthy children. Knowledge is power. Her organization, ICP Care, has done amazing work bringing awareness to this disease and support for those who have it.
2. If you would like to see more pictures from this incredible weekend of fun and learning as well as other transplant stories, please join my "Saved by a Stranger" Facebook group.
3. The Global Liver Institute invited me to sing one of my original songs entitled "Hero to Me" at the opening reception. You may watch and listen by clicking this link.
4. To purchase either an audio copy (which is cool) or a hard copy of Saved by a Stranger, please go to Amazon and be sure to leave a review.
Thank you all for reading this post, sharing your stories, and advocating for others in your lives. We are all human beings meant to enjoy, learn, teach, and grow together.
