(click here for PDF version)

Job Description: Full-time and working remotely with some travel 

Reporting to the CEO and the Executive Director, the Program Coordinator (PC) will oversee and coordinate FLF’s programs, community engagement opportunities, and special projects, including, but not limited to, Screening for Undiagnosed NAFLD and NASH 2 (SUNN-2), the Wellness League, and the State of NAFLD/NASH Care in America. This also includes supporting relationships and logistics associated with each program. The PC serves as the primary point of contact for internal and external stakeholders, including local implementing partners, on all matters related to FLF programs and special projects. 

The PC must be creative and enjoy working in a small, entrepreneurial environment that is mission driven, results driven, and patient community oriented. The ideal individual will have the ability to exercise good judgment in a variety of situations, with strong verbal communication, administrative, program management and organization skills, and the ability to maintain a realistic balance among multiple priorities. The PC will have the ability to work remotely and independently on special projects, from conception to completion, and must be able to work under pressure at times to handle a wide variety of activities and confidential matters with discretion.

This role is involved in a dynamic public health programming environment. As such, roles and responsibilities are subject to change as situations evolve. Roles and responsibilities listed above may be expanded upon or updated to match FLF’s priorities and needs. 

About The Fatty Liver Foundation

The Fatty Liver Foundation (FLF), headquartered in Boise, ID, is a non-profit patient organization dedicated to improving the identification, diagnosis, treatment and support of people living with fatty liver, non-alcoholic fatty liver disease (NAFLD), or nonalcoholic steatohepatitis (NASH) in the United States through awareness, screening, education, and patient outreach. FLF’s goal is to improve the lives of people at-risk of and living with NAFLD/NASH by raising awareness, promoting early screening and detection, educating patients, and championing the development of responsive support systems to combat the NAFLD/NASH epidemic. 

Responsibilities and Essential Functions

Budget and Grants Management

• Work closely with the CEO, Executive Director, and the CFO to design and maintain project plans and budgets for programs and special projects. 
• Oversee the quality and integrity of FLF’s grantmaking mechanics to ensure resources move to local implementing partners in a timely and efficient manner. 
• Assist with budget development, monitoring, and identification of allowable program expenditures, including reconciliation of grant budgets on a regular basis to ensure accuracy. 

Program Management 

• Oversee daily operations and coordinate programmatic activities, including special projects. 
• Complete all documentation required by funders and ensure compliance with program regulations.
• Develop clear program timelines, templates, and schedules for existing programs and special projects led by FLF. 
• Design and oversee workflows (e.g. funder proposals and reports), coordinate grant renewal timelines, manage deadlines, and track and streamline internal requests for feedback and information. 
• Develop specialized knowledge of NAFLD/NASH risk factors, non-invasive screening and diagnostic tools, linkage to care, and referral pathways in real-life settings across diverse patient populations in the United States. 
• Develop and implement program monitoring and reporting tools, including progress reports. 
• Experience working in a virtual environment with remote partners and teams. 
• Handle select matters expeditiously and proactively, follow-through to successful completion. 
• Anticipate and address problems. 

Internal Coordination

• Assist in the scheduling and maintenance of the CEO’s calendar. 
• Arrange meeting agendas; schedule and coordinate virtual meetings via Zoom, teleconferencing and other digital communication platforms. 
• Research and prepare select reports and meeting materials. 
• Facilitate, track, and manage action items related to programs and special projects for biweekly team meetings. 
• Implement tools and systems to support collaboration and information-sharing (e.g. Drive, Calendly, Monday.com). 
• Establish and maintain collaborative relationships with internal and external stakeholders. 
• Follow-up on contacts made by the CEO and executive leadership team, support cultivation of ongoing relationships. 
• Assist with the production and implementation of program development plan that incorporates a range of strategies including major donors, grants, corporate and individual appeals, social media, and special projects. 
• Lead onboarding and training, and update FLF contractors and/or interns on program-related tools, best practices, and processes. 

External Coordination 

• Work with local FLF teams to establish and/or maintain communication and coordination with local grantees and implementing partners. 
• Identify and meet technical assistance and training needs of local implementing partners and other key stakeholders. 

Qualifications and Characteristics of an Ideal Candidate

• A Bachelor’s degree. 
• Passion for and familiarity with the non-profit sector and our mission.
• Interest in liver health and strong commitment to making a difference to the lives of people in the US and around the world.
• Ability to use outstanding interpersonal, diplomatic navigation, and communication skills to build strong relationships and negotiate challenging situations, often with senior executives, in a friendly and professional way.
• Highly organized and detail-oriented with strong project management and organizational skills, including the ability to perform and prioritize multiple tasks seamlessly.
• Professional-level verbal and written communication skills.
• Demonstrated proactive approaches to problem-solving with strong decision-making capability. 
• Highly resourceful team player, with the ability to also be extremely effective independently.
• Comfortable in a high-performing, fast-paced and quickly growing organization. 
• Demonstrated ability to achieve high performance goals, meet deadlines, and adapt to changing circumstances. 
• Emotional maturity.
• Strong research skills. 
• Proven ability to handle confidential information with discretion.
• Highly proficient with the Microsoft Office Suite, G Suite, experience with project management tools such as Monday.com, and able to pick up other applications quickly and effectively.
• Pay will be commensurate with experience. 

To apply for this position, please send a resume and cover letter to [email protected].

Equal employment opportunity and having a diverse staff are fundamental principles at the Fatty Liver Foundation, where employment and promotional opportunities are based upon individual capabilities and qualifications without regard to race, color, religion, gender identify, pregnancy, sexual orientation, age, national origin, marital status, citizenship, disability, veteran status or any other protected characteristic as established under law. For more information, please visit www.fattyliverfoundation.org. 

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Equal employment opportunity and having a diverse staff are fundamental principles at the Fatty Liver Foundation, where employment and promotional opportunities are based upon individual capabilities and qualifications without regard to race, color, religion, gender identify, pregnancy, sexual orientation, age, national origin, marital status, citizenship, disability, veteran status or any other protected characteristic as established under law.

Current Job Opportunities

Program Coordinator

Current Internship Opportunities

There are no current internship opportunities available. Please check back at a later date.

The State of NAFLD/NASH Care in America is the first national survey in the US to assess the level of care and support for patients with NAFLD, NASH, and associated co-morbidity. This study is by patients for patients. Remember, we can't fix what we don't measure. We need your help to push for better patient care.

The 2022 Care Survey is the inaugural annual survey to understand the state of care for NAFLD/NASH as experienced by patients and will establish the baseline to monitor year-to-year changes in disease management progress. For more information, see the full press release here.

Please help us collect this important information!

You can take the survey in the form below or if a separate tab would be easier click here for the wide format version.

If you would rather to take the survey in Spanish, please click here.

Before Rosemary and I created the Fatty Liver Foundation I never gave much thought to the non-profit community.  We always contributed a token to some big name organization with lots of slick ads and thought little more about it. Rosemary would respond to food banks and a few other local groups from time to time but I couldn't be bothered.

God appears to have a strange sense of humor as I find myself in this "old man" stage of my life running one of the newer small non-profit patient support groups and I often think about how little I cared for the less fortunate among us as a younger man. I don't think I lacked empathy but I just didn't know what life was like for those who fall into the darkness of chronic illness and then retreat from the tumult of "normal" life.

Remember to be on the lookout for an email from us where there will be a link to schedule a time to meet with the NSF leadership team to discuss the specifics of your involvement with the Fund.

Lastly, you can click on the tabs above based on your background for more information about how to jumpstart your involvement with FLF and the NSF. We are so happy to have you!

Thank you for your interest in learning more about NSF! We are eager to meet you and to discuss how you might best contribute to our efforts to combat NAFLD and NASH. Please enter your contact information below and select the category that best describes your background.

When you submit this form, you will get email from [email protected] In this email you will be asked to activate your account if you have not already done so. Additionally, there will be a link to schedule a time to meet with the NSF leadership team to discuss the specifics of your involvement with the Fund. This meeting is not required, but we would love to speak with you if you have the time.

FOR IMMEDIATE RELEASE

Thursday, November 11, 2021, Boise, IDAHO — The Fatty Liver Foundation (FLF) today announced its activities while attending the 72nd American Association for the Study of Liver Diseases (AASLD) Annual Meeting, taking place from November 12 to 15, 2021. 

Thanks for signing up to get involved with NSF! As a medical provider, you have the opportunity to play a significant role in our screening efforts.

Learn About Non-Invasive Screening Methods

Regardless of whether you are a primary care provider or a specialist, you can help us work towards a world less impacted by NAFLD/NASH by adopting non-invasive screening methods in your practice. You may know of some of these non-invasive testing methods already, but click on each below if you would like to learn more:

Blood-Based Tests

• FIB-4 Index
• NIS4
• ELF
• APRI
• LIVERFASt

Imaging Tests

• FibroScan
• Velacur

Update Your Clinical Care Pathway for NAFLD/NASH

Another way to get involved with the NSF is to consider adopting an updated clinical care pathway, such as the one below from this recent article.

Though the AASLD has not yet changed their guidelines to recommend screening in asymptomatic populations, doctors and advocacy groups have been working tirelessly towards an update. The importance of screening asymptomatic individuals cannot continue to be underemphasized when the majority of patients do not have symptoms until they reach end-stage disease! Join us and many others in being proactive in screening for NAFLD/NASH, and help your patients address their disease before it progresses further.

Stay Connected for Future Grant Funding Opportunities

As we grow the NSF, there will likely be opportunities to apply for grant funding to support adoption of non-invasive screening in your practice. If you would like to be alerted when grant opportunities become available, please email [email protected] with the subject line "Future Grant Opportunities," with your full name, your practice name and location, and the number of patients you expect to be able to screen per month. We look forward to working with you to bring non-invasive screening and proactive clinical care pathways to all Americans!

Thanks for signing up to get involved with NSF! As an industry representative, you have the opportunity to play a significant role in and benefit greatly from our screening efforts.

Join the Partnership

As a public-private partnership, the NSF is an opportunity for your company to get involved in raising public awareness of NAFLD/NASH, increase the patient pool available for clinical trials, and generate data about long-term patient outcomes to improve the drug approval process. By joining, you will become a part of a coalition fighting for better access to care for NAFLD/NASH patients.

There are already several partners and supporters of the NSF, highlighted on our website here. If you are ready to become a partner and make a contribution, you can do so today on our website. If you are interested in becoming a supporter of the Fund, please mention this in our meeting and we can discuss your timeline for eventual contribution.

Thanks for signing up to get involved with NSF! As a patient, you play a critical role in all of FLF's efforts. You are the reason we exist and your participation is of the utmost importance for the success of our programs.

Spread the Word about the NSF

We need your help to amplify our message for the NSF! Share our efforts with your family, friends, coworkers, mailman and anyone else you can chat up for a few minutes. Download our NSF Fact Sheet for a short summary of what the Fund aims to achieve and follow us on Twitter @FLF_NSF to stay updated on the latest news regarding the Fund.

Join the Wellness League

The Wellness League is FLF's digital platform to help empower people to take charge and manage their lives with regards to routine, diet, exercise, and medication as they fit into their social and occupational activities. The Wellness League platform will help participants track their key metrics (BMI, bloodwork, scans), encourage reduction of risk classification through lifestyle and diet changes, connect to local resources, and learn more about and connect to clinical trial opportunities. The content and frequency of communication on the Wellness League platform will be fully customizable, dependent on both an individual’s disease stage and preferences. Though it is a digital platform, participants in the Wellness League will be supported by real people called Wellness Navigators; some will be embedded in local communities through SUNN-2 and some will be entirely virtual. To the extent possible, Wellness Navigators will be patients themselves, able to draw on their personal experience and understanding. To learn more about the Wellness League, view and download the flyer here.

Though the official Wellness League platform is scheduled to go live in January 2022, you can opt to join the cause now. To enroll in the Wellness League, please fill out this consent form and schedule a meeting to speak with a Wellness Navigator. 

FLF Needs Your Support Now!

FLF could not operate without the support of our community. Through donations big and small, we are able to keep our screening programs and patient support initiatives running and expand the services we can offer. To help us keep making progress in the fight against NAFLD/NASH, we need your contribution today!

About the Fatty Liver Foundation (FLF)

The Fatty Liver Foundation is the only national, non-profit patient advocacy organization dedicated to improving the identification, diagnosis, treatment, and support of Americans with fatty liver, NAFLD or NASH through awareness, screening, education and patient outreach. FLF’s goal is to improve the lives of both asymptomatic and diagnosed patients by raising awareness among the general public and medical communities, promoting non-invasive screening methodologies, educating patients, and championing the development of responsive lifestyle support systems for individuals of the growing epidemic of fatty liver disease. FLF was founded in 2017 by NASH patient Wayne Eskridge and his wife and caregiver Rosemary Wickowski, pictured below.

You can read more about Wayne's story here. He remains actively involved in the Foundation, and you can read about the rest of the management team here. For a concise and sharable document about the Foundation, you can download a fact sheet about us here.

Summary of Links:

• Wayne's story
• FLF Fact Sheet

FLF's Key Programs

The NAFLD Screening Fund (NSF)

The NSF is a public-private partnership led by FLF with the goal of generating funding for NAFLD/NASH screening. FLF has started to bring together a multitude of stakeholders, including industry representatives, clinical research organizations, communications companies, other non-profit organizations, and, of course, patients. By creating a pool of resources to encourage preventive screening activities, all stakeholders stand to benefit. Screening more people for NAFLD/NASH is a critical and achievable goal that will help shape the way society engages with our growing burden of noncommunicable diseases. Beyond increasing preventive screening, secondary goals of the NSF include increasing awareness of the silent epidemic, establishing a bigger population for clinical trial recruitment, creation of a safety net ecosystem for ongoing support and care for afflicted individuals. You can download a fact sheet about the NSF here and click here to read more about the initiative.

Summary of Links:

• NSF Fact Sheet
• NSF Overview

Screening for Undiagnosed NAFLD/NASH (SUNN) Studies

One of the main objectives of FLF is to promote screening in asymptomatic individuals. The Foundation has made progress toward this goal through research initiatives called the SUNN studies. SUNN-1 was implemented in Galveston County, TX and successfully screened over 1000 individuals using a FibroScan machine at community locations. The report from SUNN-1 is being published in PLOSOne. You can learn more about the SUNN Studies here and download the SUNN-1 manuscript here. FLF is in the planning and fundraising phase for SUNN-2, which will expand on the tactics and findings of SUNN-1 to screen more people while also connecting them to care and providing support. SUNN-2 will initially return to the Galveston County, TX area covered in SUNN-1, with expansion sites in Waco, TX and the Washington, DC/Maryland/Virginia area. If you are interested in supporting SUNN-2, please consider making a donation to the NSF.

Summary of Links

• SUNN Studies
• SUNN-1 Manuscript
• Make a donation to NSF

The Wellness League

The Wellness League is FLF's digital platform to help empower NAFLD/NASH patients to take charge and manage their lives with regards to routine, diet, exercise, and medication as they fit into their social and occupational activities. The Wellness League platform is scheduled to go live in January 2022 and will help participants track their key metrics (BMI, bloodwork, scans), encourage reduction of risk classification through lifestyle and diet changes, connect to local resources, and learn more about and connect to clinical trial opportunities. The content and frequency of communication on the Wellness League platform will be fully customizable, dependent on both an individual’s disease stage and preferences. Though it is a digital platform, participants in the Wellness League will be supported by real people called Wellness Navigators; some will be embedded in local communities through SUNN-2 and some will be entirely virtual. Wellness Navigators will have strong linkages to the communities from which they come. To learn more about the Wellness League, view and download the flyer here.

Summary of Links

• Wellness League Flyer

The Liver Friendly Diet

As the only available treatment for NAFLD/NASH currently available is diet and lifestyle change, FLF has designed and promoted the Liver Friendly Diet, accessible here in its entirety. NAFLD/NASH patients are often told by their doctors to lose weight and come back in a few months. Though this seems like straightforward advice, people need more hands on and specific support to be successful in changing their habits. FLF promotes the Liver Friendly Diet as one aspect of the lifestyle change equation, while also encouraging patients to understand that they are really changing their lives forever, not just adopting a temporary diet. The Liver Friendly diet is similar to a Mediterranean diet with some liver-specific recommendations for foods such as extra virgin olive oil and coffee. Click here for a one-page printout of the Liver Friendly diet (great for sticking on your fridge!) and a short fact sheet on how you can get started on loving your liver today.

Summary of Links:

• Liver Friendly Diet
• 1-page Liver Friendly Diet
• Love Your Liver Fact Sheet

FLF Needs Your Support Now!

FLF could not operate without the support of our community. Through donations big and small, we are able to keep our screening programs and patient support initiatives running and expand the services we can offer. To help us keep making progress in the fight against NAFLD/NASH, we need your contribution today!

The NAFLD Screening Fund is a collaborative effort led by FLF. Our partners and supporters will continue to grow as the Fund expands.

Our partners, those who support the Fund, are:

Ms. Athena Pei Tung

Our supporters, those who have expressed interest in becoming a partner of the Fund, are:

WHAT'S THE PROBLEM?

100 million people have NAFLD and don't know it

20 million people have NASH and don't know it

5 million people have cirrhosis and don't know it

• A tsunami of disease is building in society and being exacerbated by the current COVID-19 pandemic
• Most people have no knowledge of NASH and doctors rarely warn patients of risk or attempt diagnosis absent symptoms
• There are no treatments and not enough patients to fill clinical trials necessary for approval

THE SOLUTION

Mobilize a public-private partnership

• Supporting broad outreach through patient advocates
• Mobilizing local community peer-to-peer groups
• Increasing uptake of preventive screening practices

THE PAYOFF 

Healthier, smarter patients, better care, reduced cost, improved participant pool

• Saving lives through continued education & monitoring
• Encouraging participation via robust clinical trial support
• Improving collaboration instead of stifling competition

With recent advancements in the diagnostics and potential treatments for NAFLD, screening and testing are now the critical nexus between identification of disease and effective intervention. To meet this need, the NAFLD Screening Fund’s primary objective is to scale-up evidence-based screening and testing for NAFLD. Funded activities would boost the screening practices needed to identify asymptomatic disease and staging of NAFLD/NASH patients.

The expansion of screening and staging of fatty liver disease is a model of community outreach that has been proven by FLF in medical and non-medical settings. The Fund’s impact will be expanded education and awareness of NAFLD, achieved through screening, which has been shown to empower individuals’ ownership and participation in their health and healthcare. Through multiple site collaborations, new screening technologies, improved data management systems, and more trained personnel, the Fund will be leveraged to rapidly scale up community screening efforts. The NAFLD Screening fund will be the catalyst for greater patient engagement in research and development, including treatment preparedness as new therapies become available. It is a mechanism through which many streams of financial support, both public and private, can be coordinated and focused on this rapidly growing health threat.

Thank you for your interest in the NAFLD Screening Fund!

We are looking for both partners and supporters for the Fund. If you would like to learn more about what being a partner or supporter entails or have any other questions, please email us at [email protected]. We are happy to communicate over email or to set up a time to connect over Zoom. Please let us know your preference and we will get back to you as soon as possible. 

Fatty Liver Foundation Launches a Public-Private Partnership to Combat the Silent Epidemic of Nonalcoholic Fatty Liver Disease (N)

Liver disease is an ignored epidemic. FLF intends to change the paradigm with the NAFLD Screening Fund.

 Building on the experience of FLF, the leading patient advocacy organization, the NAFLD Screening Fund aims to identify and support at-risk populations to combat the rising incidence and mortality of NAFLD in the United States.

The Fatty Liver Foundation (FLF) is launching the NAFLD Screening Fund, a new five-year, multi-stakeholder, public-private partnership aimed at accelerating progress in the detection, diagnosis, staging, care, and research of non-alcoholic fatty liver disease (NAFLD) among at-risk and asymptomatic populations in the United States, where there is a significant unmet need.

Despite advances in research, diagnosis, and care, NAFLD places a heavy burden on individuals, families, and health care systems. Before COVID-19, it was estimated that more than 100 million Americans had NAFLD or its more advanced and aggressive form, non-alcoholic steatohepatitis (NASH), and most were unaware of it. Since the onset of COVID-19, the average American has gained 29 pounds, contributing to the growing burden of noncommunicable lifestyle diseases such as obesity and diabetes, and greatly increasing the at-risk population who remain undiagnosed for NAFLD. The societal tragedy is that if diagnosed and addressed early enough, NAFLD can be reversed.

The level of screening for NAFLD among high-risk and asymptomatic populations remains woefully inadequate in medical and community-based settings and this lack of services has only been exacerbated by COVID-19. People with NAFLD and metabolic syndrome are four times more likely to develop severe manifestations of COVID-19 than those without NAFLD, regardless of the presence of diabetes. With COVID-19 disproportionately impacting people at-risk for and living with NAFLD by threatening their timely diagnosis and care, and increasing their risk of severe disease, it is more urgent than ever to address these health disparities. Though these same issues exist nationwide, they are particularly acute in under served and non-white communities.

“Our commitment to re-imagining NAFLD screening goes beyond FLF’s SUNN-1 (Screening for Undiagnosed NAFLD and NASH) study, to helping close the gaps in prevention and linkage to care and/or clinical trials for at-risk, asymptomatic populations through innovative screening models in underserved communities,” said Wayne Eskridge, CEO and Co-Founder of FLF. “We must work with other organizations and stakeholders in order to successfully raise awareness, address health disparities, and increase access to screening. We are at a tipping point where we can help catalyze and change the course of NAFLD diagnosis and care for all Americans.”

“The number of NAFLD cases is rising rapidly among the U.S. adult population (aged ≥15 years), and prior to COVID-19 was projected to reach 33.5% in 2030. We don’t yet know how extensive the long-term damage of the pandemic will be for chronic disease patients, but we can expect that it will likely catalyze more serious problems. Unfortunately, we are already making most diagnoses late in the course of disease, leading to potentially serious complications and outcomes,” says Neeraj Mistry, MD, MPH, Chief Medical Officer of FLF. “The NAFLD Screening Fund is part of FLF’s broader commitment to mobilize new resources and strengthen the capacity of key NAFLD stakeholders to reverse these trends. This new initiative not only promises to prevent thousands of premature deaths, but also to contribute to greater equity in NAFLD care and research.”

FLF’s NAFLD Screening Fund is a public-private partnership to mobilize leading organizations from the private sector, philanthropic foundations, public health agencies, and non-profit organizations. The Fund is supported by leading companies and individuals from the private and philanthropic sectors including Applied Clinical Education, CME Zone, Gastroenterology & Endoscopy News, Madrigal Pharmaceuticals, Inc., McMahon Group, and Terns Pharmaceuticals, Inc., and Ms. Athena Pei Tung.

The NAFLD Screening Fund aims to achieve the following outcomes by 2026:

1. Fund community-based screening projects for NAFLD/NASH in undiagnosed, asymptomatic at-risk populations.
2. Drive awareness of NAFLD and the importance of early detection.
3. Foster education about healthy lifestyles.
4. Support NAFLD and NASH patients with linkage to care and clinical trial enrollment education.
5. Strengthen networks and collaborations for NAFLD/NASH screening at local, regional, and national levels.
6. Unite the voice of the NAFLD/NASH community, including patient organizations and groups, to advocate for more effective NAFLD/NASH screening, staging and care.
7. Provide data to guide research and regulatory decision making where patient interests are impacted.

“Key to reversing the rise in NAFLD cases and mortality rates is our ability to work together to leverage and expand the will and resources that currently exist, supporting the creation of a common agenda to maximize impact through collective action,” says Henry E. Chang, Executive Director of FLF. “In practical terms, with the necessary funding and expertise, the NAFLD Screening Fund has the potential to support 50,000 NAFLD patients, fund various scalable and sustainable NAFLD screenings and linkage to care projects that are designed to address health disparities among at-risk and under served populations, and help accelerate the development of drug regimens for the treatment of NAFLD and NASH.”

Learn how you can help support the NAFLD Screening Fund and address this significant unmet need by signing up here.

About the Fatty Liver Foundation

The Fatty Liver Foundation is a non-profit patient organization dedicated to improving the identification, diagnosis, treatment and support of people living with fatty liver, NAFLD or NASH through awareness, screening, education, and patient outreach. FLF’s goal is to improve the lives of both asymptomatic and diagnosed patients by raising awareness, advancing wellness screening, educating patients, and championing the development of responsive support systems for individuals of the growing epidemic of fatty liver disease. Connect with us on www.fattyliverfoundation.org, Facebook (Fatty Liver Foundation JUST LIVER NEWS), Twitter (@LiverSaver), and YouTube (Fatty Liver Foundation). 

About the NAFLD Screening Fund

With recent advancements in the diagnostics and potential treatments for NAFLD, screening and testing are now the critical nexus between identification of disease and effective intervention. To meet this need, the NAFLD Screening Fund’s primary objective is to scale-up evidence-based screening and testing for NAFLD. Funded activities will boost the screening practices needed to identify asymptomatic disease and staging of NAFLD/NASH patients.

The expansion of screening and staging of fatty liver disease is a model of community outreach that has been proven by FLF in medical and non-medical settings. The Fund’s impact will be expanded education and awareness of NAFLD, achieved through screening, which has been shown to empower individuals’ ownership and participation in their health and healthcare. Through multiple site collaborations, new screening technologies,  improved data management systems, and more trained personnel, the Fund  will be leveraged to rapidly scale up community screening efforts. The NAFLD Screening Fund will be the catalyst for greater patient engagement in research and development, including treatment preparedness as new therapies become available. It is a mechanism through which many streams of financial support, both public and private, can be coordinated and focused on this rapidly growing health threat.

Many patients in our forums report experiencing right upper quadrant (RUQ) pain. Though NAFLD and NASH are largely asymptomatic, RUQ pain occurs in about one-third of NAFLD/NASH patients and varies in character and severity; some people report a mild aching fullness sensation, while others experience steady sharp pains that can disrupt their sleep.[i] Unfortunately, when patients report RUQ to their primary care providers, routine testing such as bloodwork or an ultrasound may not show anything wrong. With no physical indication that something is wrong or anything identifiable as the issue, pain may go unaddressed for years. If it is addressed, it isn’t uncommon for patients to be referred to psychiatric care, as if the RUQ pain were a symptom of a mental disorder as opposed to a physical disorder like NAFLD. This dismissal of RUQ pain as a symptom is unfortunate and means that the very real pain patients are experiencing is not taken seriously and that fatty liver disease that could have been caught earlier remains undetected.

As doctors always like to remind us, the liver itself has no pain receptors. It has been hypothesized that RUQ pain associated with and near the liver may be caused by distension of Glisson’s capsule, which surrounds the liver and has many pain receptors.[ii] In other words, people who have an abnormally large liver due to inflammation, steatosis, or fibrosis may be putting pressure on the liver capsule, which manifests as pain in the RUQ. As you can see in the microscopic liver picture below, Glisson's capsule is partially highlighted in green, and is a thin layer around the liver.

Though RUQ pain may be a sign of NAFLD or NASH, it may also be caused by other factors, so your doctor may only consider it a symptom if you are also experiencing unexplained fatigue or if you are a member of a population considered high-risk.[iii] That being said, it is one of the two more common symptoms that present in people with any stage of NAFLD/NASH. Even though NAFLD and NASH are mostly asymptomatic, RUQ pain could be a hint that you should consider thinking about your liver.

Some patients who are able to lose weight and reduce steatosis in their liver may experience reductions in RUQ pain as they continue to decrease their stress on the liver. Other patients are successful at losing weight and still experience RUQ pain. On the flip side, people who have been temporarily successful at changing their diets and lifestyles may have reductions in RUQ pain that reemerge when they revert to their old habits. Know that everyone’s bodies react to changes in weight and diet differently, so don’t be discouraged if your RUQ pain doesn’t immediately disappear once you have made lifestyle changes. Remember that lifestyle changes are truly a commitment for life—not temporary or quick fixes.

If you would like to read more about a patient's story involving RUQ pain, check out Terri's cautionary tale by clicking here.

[i] cancertherapyadvisor.com/home/decision-support-in-medicine/gastroenterology-hepatology/nonalcoholic-steatohepatitis-and-nonalcoholic-fatty-liver-disease/

[ii] cancertherapyadvisor.com/home/decision-support-in-medicine/gastroenterology-hepatology/nonalcoholic-steatohepatitis-and-nonalcoholic-fatty-liver-disease/

[iii] https://www.healthgrades.com/right-care/liver-conditions/5-signs-and-symptoms-of-fatty-liver-disease

PPAR -- Peroxisome proliferator-activated receptor

Lanifibranor by Inventiva leads the way

Wayne, you must be crazy to think I'll read something that starts out like that!!!

Be calm, I promise, it will make sense and if liver disease interests you this will be worth your time.

Therapies for NAFLD/NASH have been an elusive target and recent history is littered with promising molecules that many thought were finally going to lead to treatments for our disease. This is not a trivial problem. People are dying and our weapons are coffee and vitamin E.

Don't get on me about lifestyle right now.  I know that tune but I also connect through our peer groups with thousands of people who need more than that and drugs will be part of a proper management of this disease if we can ever find something that works.

Becky Taub and Paul Friedman, the founders of Madrigal Pharmaceuticals, are heroes of mine.

There has been a lot of disappointing news about NAFLD/NASH therapy research this past year.  I thought you might enjoy a look at some new data that is very encouraging. Terns Pharmaceutical just reported very positive 12 week results of the drug TERN-101. Below is a chart from their report about changes in results using a fairly new non-invasive test by Perspectum, the Liver MultiScan measuring a value called cT1 or corrected T1.  I'll explain it a bit later but for the moment just know that it is an indirect measure of fibrosis.  Click the image to see a larger view.  As a phase 2 study this is a small number of patients but the effect on their livers in only 12 weeks is among the best early data that we have seen.

We all know the issues. Too much disease, no treatments, a looming health crisis made worse by the pandemic. We are here on International NASH day and it seems like an apt time to wonder if there might be a better way.  If you haven't registered for the event I invite you to do so by clicking on the image below, but I also invite you to think about the future of research and how we as patients can support a better way.