Bio:
At 12 years old, I was diagnosed with acute liver failure from Budd-Chiari syndrome as a complication of JAK2+ MPN. After undergoing a transjugular intrahepatic portosystemic shunt (TIPS), my liver stabilized and allowed me to wait for a new liver. For five years, I sat in waiting rooms with other patients experiencing shared heartbreaks, successes, frustrations, and miracles of the organ donation and transplantation system before ultimately receiving my life-saving second chance in 2020 at the age of 17.
After my transplant, I knew I wanted to raise awareness for organ donation in my community. It was clear that there wasn't enough community education and advocacy around the topic, and I wanted to help change that. I joined forces with Student Organ Donation Advocates (SODA), starting the first chapter in Virginia at George Mason University, where I am currently completing my Bachelor of Science in Molecular Biology and Biotechnology. From there, my involvement in the organ donation and transplantation community grew. I applied to TCAC in 2023 after seeing one of Brooke’s Instagram posts. I knew I wanted to be more involved with a professional organization like AST, and I was excited to see AST incorporating patient voices into their events and day-to-day work!
Advocacy Experience:
I started my advocacy experience with Student Organ Donation Advocates (SODA). I was fortunate enough to start the first SODA chapter in Virginia with 2 of my friends in college. From there I started speaking at organ donation awareness events and I became an ambassador with my local organ procurement organization. I joined the TCAC in 2023 and spoke at the 2024 ATC patient session focused on mental health in transplant recipients and caregivers. I participate in a PCORI led research study called Transplant Advocacy Partners (TAP) aimed at training AYA transplant recipients for transplant advocacy roles within the transplant community. I’ve spoken at multiple conferences and events related to advocacy efforts in pediatric and adolescent transplant patients. In 2024 I worked with my pediatric transplant team to create a peer-led education group for adolescent transplant patients. In 2025 we are expanding the program to mentor younger patients providing them with positive role models who they can relate to and share transplant experiences with.
Advocacy Interests:
I am specifically focused on improving the transplant system for adolescent and young adult patients and creating better organ donation awareness resources for the general public. I feel that education resources need to be more well rounded and accessible for the community to learn about organ donation and for transplant patients to learn how to best care for their transplanted organ(s). Being a STEM student I also focus on patient centered research and working to incorporate more patient voice and input into scientific research.
Contact Madelyn via email
Advertisements
