Surfing the MASH Tsunami  Por  arte de portada

Surfing the MASH Tsunami

De: SurfingNASH.com
  • Resumen

  • 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

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Episodios
  • S5 - E18.5 - How Listeners Can Support HOPE, A Unique Support Community For People Who Have Harmed Their Bodies Through Alcohol Use Disorder
    Jun 11 2024

    In this final conversation, Sober Livers leaders Jenn Jones and Beth Lehman share what they hope listeners will take from this discussion of HOPE (Healing Others with Peers and Education) and how they can help this unique support program grow.

    The conversation starts with Roger asking what Sober Livers and/or transplant centers can do to help patients learn how to find a living donor. Beth says one key is to make "living liver" synonymous with transplantation, "as with donating a kidney, right?" Jenn adds that an individual who sought a live donor plans to help Sober Livers educate HOPE members on using social media more effectively. She adds that through HOPE, Sober Livers needs to make people who are less social media savvy aware of options and how to pursue them. Also, from a policy perspective, living donor surgery is considered elective for the donor. Until this changes, the process will be exceptionally expensive -- usually prohibitive -- for the donor.

    In closing, Roger asked what issues the conversation missed. Beth asks that everyone remember the website soberlivers.org. Jenn comments that the organization does not yet have the funding it needs to expand during the first year. She notes that it is a 501(c)3 whose books are completely independent of the Fatty Liver Foundation and states that moving the program from Zoom to a more secure platform and covering all first-year expenses will cost $60,000. With that, the conversation ends.

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    10 m
  • S5 - E18.4 - The Future Of HOPE: Expanding the Support Community for Patients Who Have Harmed Their Bodies Through Alcohol Use Disorder
    Jun 11 2024

    Sober Livers leaders Jenn Jones and Beth Lehman join Roger Green to discuss HOPE, their new support community for people who have harmed themselves through AUD (Alcohol Use Disorder). This conversation focuses on plans and hopes for the future.

    Roger starts this conversation by sharing a story from his own experience about the pressure caregivers struggle with and asks how HOPE (Healing Others with Peers and Education) will address caregivers and their needs. Beth acknowledges that this need is legitimate and that caregivers for these people may need a program of their own. The group wrestled with this issue when considering their original offering, but decided the organization needed to meet the needs of people living with this situation before offering services to caregivers. Jenn elaborates that the reason not to include caregivers in the initial group population is that it may limit the items and issues that HOPE's core constituency is willing to discuss. She says that creating a parallel caregiver program will be a pivotal next step once the target group is up and running.

    Next, Roger asks what else Sober Livers would like to implement over time to enhance the program. Jenn notes that the organization plans to create benchmarks and conduct qualitative and quantitative research to ensure that “this is an effective community that’s actually helping people.” They will share this data and a resulting strategic plan with HOPE’s WHAC (Whole Health Advisory Council) and prospective sponsors, including one healthcare products company that has already committed to a starter grant.

    In practical terms, Jenn mentions starting a second meeting at a different time of day, possibly one more suitable for West Coast residents with jobs. They plan to recruit transplant centers to make information available so that appropriate patients will enroll and even make initial contact during first hospitalization. They would like to educate the people living with disease on options they might not have considered and scientific advances. At one point, Beth mentions a desire for in-person meetings in cities with major transplantation centers.

    In terms of education, Jenn mentions liver perfusion and finding a living donor as two areas Sober LIvers would like to provide support.

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    10 m
  • S5 - E18.3 - Specific Support Elements HOPE Provides For People Who Have Harmed Themselves Due To Alcohol Use Disorder
    Jun 11 2024

    In this conversation, Society of Sober LIvers leaders Jenn Jones and Beth Lehman describe the HOPE (Healing Others with Peers and Education) program. They go on to discuss why version 1.0 does not include specific support for caregivers.

    Jenn describes the program's core elements, starting with a monthly video call that is a support meeting one month and an educational program the next. The program will include a Facebook group where individuals can continue their conversations in private, plus a weekly blog and an array of educational resources. Beth adds that stopping drinking and addressing addictive behavior are not necessarily the same thing and that HOPE will help individuals address their overall behavior, not merely their AUD. Jenn adds that Sober Living is addressing issues holistically and anticipates that ideas and activities will "bubble up" from members. She also anticipates scaling up in time as interest grows.

    Roger asks how a provider can help patients find their ways to Sober Livers and HOPE. Beth says the key is for the group to deliver educational materials to the offices where patients go. After Roger shares the group's e-mail address (soberlivers.org), Jenn notes that the Zoom address for the support meetings will not be publicly available. People must enroll to be invited. While enrolling on the Sober Livers website, they can learn more about the organization and its other resources.

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    11 m

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