S4-26.1 – What Patient Advocate Organizations Are Doing Around the World in Support of #NASHDay 2023

S4-26.1 - What Patient Advocate Organizations Are Doing Around the World in Support of #NASHDay 2023
The podcast celebrates and reflects on International #NASHDay 2023 with a panel of patient advocates (Michael Betel, Gina Villiotti Madison and Marko Korenjak) and co-hosts Louise Campbell and Roger Green. This conversation reviews the unique ways different organizations from across the world have interacted with and shown support for #NASHDay 2023.

Thursday, June 8 was International #NASHDay 2023 and the podcast hosted a special session featuring patient advocates Gina Villiotti Madison, Marko Korenjak and Michael Betel. With co-hosts Louise Campbell and Roger Green, the group shares both a positive and sobering discussion around the Fatty Liver public health epidemic and its impact on younger generations now and into the imminent future.

This conversation starts with Roger asking each of panelist to describe the activities that their organizations have undertaken as part of International #NASHDay. Gina leads by talking about two of her organization’s activities in the Pittsburgh area. First, the NASH kNOWledge released a video playing on the theme of Step Up for NASH. The fun video features simple dance steps and routines by organization leaders and volunteers. Second, NASH kNOWledge sponsored an event Thursday evening focused on the Hispanic community, where NAFLD is significant and under-managed disease. Gina goes on to discuss the organization’s overall commitment to the Hispanic community.

Michael discusses the range of interviews he has been doing with major organizations as well as an in-person event Thursday night in the Ottawa area. On Saturday, Fatty Liver Alliance plans a full day community event. Marko next notes that ELPA decided to make June a Fatty Liver Month initiative triggered by multiple online posts designed to get the attention of leaders throughout the European Union. On International #NASHDay ELPA held an event at the EU parliament in Brussels with patients and speakers from ten different countries. Marko closes his comments by noting that when ELPA talks to parliament members about adult NAFLD, they are far less interested than when he ELPA discusses a childhood disease. This leads Roger to ask whether talking about children is a motivator to legislators and key figures in other countries, and if so, why? As the conversation winds down, Louise discusses motivations in the UK built around projections of declining life expectancy, coupled with the fact that 39% of obese UK patients have an NAFLD. The rest of the panelists follow by sharing their own perspectives which align with Roger’s observation and Louise’s comments.

This is a particularly important and moving episode that captures a range of topics pertinent to the patient perspective and, more broadly, stepping up to NASH. If you have questions or interest around the International #NASHDay 2023, we kindly ask that you submit reviews wherever you download our discussions. Alternatively, you can write to us directly at questions@SurfingNASH.com. We welcome all stories around how you and your community stepped up to NASH this year and look forward to broadening the discourse.

Stay Safe and Surf On!

This episode was generously sponsored by Madrigal Pharmaceuticals.
Madrigal Pharmaceuticals, Inc. is a clinical-stage biopharmaceutical company pursuing novel therapeutics for nonalcoholic steatohepatitis (NASH), a liver disease with high unmet medical need. Madrigal’s lead candidate, resmetirom, is a once daily, oral, thyroid hormone receptor (THR)-β selective agonist designed to target key underlying causes of NASH in the liver. For more information, visit www.madrigalpharma.com.

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