Surfing the MASH Tsunami
Driving the Discussion in Fatty Liver Disease. Join hepatology researcher and Key Opinion Leader Jörn Schattenberg, Liver Wellness Advocate Louise Campbell, and Forecasting and Pricing Guru Roger Green and a global group of Key Opinion Leaders and patient advocates as they discuss key issues in Fatty Liver disease, including epidemiology, drug development, clinical pathways, non-invasive testing, health economics and regulatory issues, from their own unique perspectives on the Surfing the MASH Tsunami podcast. #MASH #MAFLD #FattyLiver #livertwitter #AASLD #GlobalLiver #NoNASH #EASL
Surfing the MASH Tsunami
S6.14.1 - How the Harrison Patient Advocacy Fellowship Came To Be
In June, the Fatty Liver Foundation officially launched the Stephen A. Harrison Patient Advocacy program and announced its first class of 20 Fellows. In today's conversation, Louise Campbell and Roger Green interview the founders to learn what motivated them to launch this program, and we meet five of the initial Fellows.
Program Co-ordinator Elena Samsonova opens the conversation by celebrating last week's onboarding of 20 inaugural Fellows and the chemistry between them. She goes on to introduce five of them:
- Steven Rodrigues (ALD, UK citizen) shares his recent experience giving a 15-minute national interview on BBC Radio 5 discussing ALD clinical insights.
- Silvana Lesidrenska (Hepatitis B, Bulgaria) shares her desire to learn more about SLD as part of her advocacy leading a liver patients association in Bulgaria.
- Julie Peyout (MASH, Canada) is a great-grandmother who was recently found free after therapy for Non-Hodgkin's Lymphoma.
- Pam Miller (MASH cirrhosis, US) learned 24 years ago that she had MASH cirrhosis when her surgeon aborted a bariatric procedure. Since then, she has lived with cirrhosis and experienced hepatic encephalopathy (HE). She has participated in clinical trials, lobbied legislators, and collaborated with professional societies.
- Melanie Smith (MASH cirrhosis, US) has lived with stage-4 MASH cirrhosis since age 36 (sixteen years ago) and experiences hepatic encephalopathy (HE). She has led support groups for over a decade.
Next, Fatty Liver Foundation President Wayne Eskridge recounts the program's foundational story. He describes Stephen as a man with a genuine commitment to patients and his passing as a "tremendous loss." This led Wayne to discuss this idea with Rebecca Taub of Madrigal, "another one of my heroes." (Madrigal supports this program.)
Elena describes how she joined the FLF to lead this program. Roger asks the Fellows where and how they intend to make a difference. Their goals vary, from working in a Biopharma company advocating for patients to "going to the top," perhaps even lobbying the HHS Secretary, to expanding their own education and knowledge about the various forms of SLD.