Fatty Liver Foundation Announces Completion of the Recruitment Phase of SUNN Study (Screening for Undiagnosed NAFLD and NASH)
“Completing recruitment for this proof-of-concept study is another important step forward for FLF’s ongoing community outreach, education and advocacy efforts toward proactive screening for advancing liver disease among at-risk populations for NAFLD and NASH,” commented Wayne Eskridge, FLF’s Co-Founder and Chief Executive Officer.
An estimated 100 million Americans have NAFLD, or its more serious form NASH. Despite the significant morbidity associated with NAFLD and NASH, currently there are no global consensus guidelines to screen for liver fibrosis in at-risk individuals, including people older than 50 years with type 2 diabetes or metabolic syndrome. The medical standard of care for asymptomatic liver disease is to not actively look for the condition. As a society we do not try to screen for advancing liver disease. This practice commonly results in the first time a patient hears about NASH is being told they have cirrhosis or end stage liver disease. As a patient-led education and advocacy organization, FLF believes the current policy is incorrect.
“We believe it is just wrong to allow a patient become terminally ill before telling them about their liver disease,” said Neeraj Mistry, MD, MPH, FLF’s Chief Medical Officer. “There are no drugs to treat liver disease so doctors don’t look for it, but there are things people can do to avoid cirrhosis. Sadly, while we speak of wellness as a goal, without a pill, we don’t promote liver health.”
The SUNN study is a clinical trial sponsored by patients to develop data to argue for proactive screening for advancing liver disease. FLF aims to give visibility to, and to amplify the voices of people with NAFLD and NASH. FLF’s goal is to play a fundamental role in shaping the scientific, educational, and public health response to NAFLD and NASH by advocating and championing a patient-centric approach to improving the identification, diagnosis, treatment and support of people with NAFLD and NASH.
EASL 2019
The Fatty Liver Foundation Amplifies
The Voice of Patients with NAFLD and NASH
at The International Liver Congress™ 2019
FOR IMMEDIATE RELEASE Date: April 2, 2019
VIENNA, AUSTRIA (April 2, 2019) — At the upcoming International Liver Congress™ 2019, from April 10 to 14, 2019 in Vienna, Austria, the Fatty Liver Foundation aims to give visibility and amplify the voices of people with non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH). The International Liver Congress™, the annual European Association for the Study of the Liver (EASL) meeting, is one of the largest conferences of its kind and plays a fundamental role in shaping the scientific, educational, and public health response to NAFLD and NASH. At this year’s Congress, the Fatty Liver Foundation will for the first time attend as a key player for advocating and championing patient-centric approach to improving the identification, diagnosis, treatment and support of people with NAFLD/NASH.
NAFLD is rapidly being recognized as one of the most prevalent causes of chronic liver disease worldwide and the most common form of liver disease in children. NAFLD can potentially progress to cirrhosis, liver failure and liver cancer. Due to liver-related morbidity and mortality, NAFLD has major economic impact on healthcare costs. The majority of people living with NAFLD are asymptomatic and diagnosed incidentally. Currently, there are no approved treatments for NAFLD and NASH, except for lifestyle modifications.
“When combined with their common comorbidities, NAFLD and NASH are the Swiss army knife of death.” said Wayne Eskridge, CEO of the Fatty Liver Foundation. “This disease has reached epidemic levels, so we’re energized by EASL’s inclusion of the patient voice in developing not only effective, but also relevant, medical treatments.”
Available for Interview
Wayne Eskridge, CEO of the Fatty Liver Foundation
Wayne Eskridge, an electrical engineer from the University of Idaho, worked in software and electronics through a 50-year professional career. Starting out as a computer programmer, he held both technical and executive roles in both public and private corporations in businesses of all sizes, from start-ups to Fortune 500 firms.
Eskridge was first diagnosed in 2010 and his subsequent experience in learning about NAFLD/NASH, which was challenging, led him to develop a website aimed solely at educating patients about this disease. Eskridge was astounded to learn that today an estimated 100 million Americans have “silent” fatty liver disease and most are completely unaware of it. While there is currently no medical treatment for NAFLD/NASH, Eskridge has successfully improved his liver health solely through lifestyle changes. As a champion for the patient voice and the founder of the Fatty Liver Foundation, Eskridge focuses on disease prevention and education in the hope of helping others avoid his difficult experiences.
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About The Fatty Liver Foundation
The Fatty Liver Foundation is a non-profit patient organization dedicated to improving the identification, diagnosis, treatment & support of Americans with fatty liver, NAFLD or NASH through awareness, screening, education and patient outreach. The Foundation’s goal is to improve the lives of both asymptomatic and diagnosed patients by raising awareness, developing wellness screening, educating patients and championing the development of a responsive support systems for individuals of the growing epidemic of fatty liver disease.
For more information on the Fatty Liver Foundation, please visit www.fattyliverfoundation.org and follow the Fatty Liver Foundation on Twitter (@LiverSaver).
About The International Liver Congress™
This annual congress is the biggest event in the EASL calendar, attracting scientific and medical experts from around the world to learn about the latest in liver research. Attending specialists present, share, debate and conclude on the latest science and research in hepatology, working to enhance the treatment and management of liver disease in clinical practice. This year, the congress is expected to attract approximately 10,000 delegates from all corners of the globe. The International Liver Congress™ 2019 will take place from 10¬–14 April 2019 at the Reed Messe Wien Congress and Exhibition Center, Vienna, Austria.
About The European Association for the Study of the Liver (EASL)
Since its foundation in 1966, this not-for-profit organization has grown to over 4,000 members from all over the world, including many of the leading hepatologists in Europe and beyond. EASL is the leading liver association in Europe, having evolved into a major European association with international influence, and with an impressive track record in promoting research in liver disease, supporting wider education and promoting changes in European liver policy.
Note to Editor
Wayne Eskridge, CEO of the Fatty Liver Foundation, is available for interview prior to and on-site during the International Liver Congress™.
Media Contact:
Henry E. Chang | +1 917 400 8900 | [email protected]
Wayne Eskridge | +1 208 860 0546 | [email protected]
Press FAQ --- Fatty Liver Foundation
MEDIA FREQUENTLY ASKED QUESTIONS (FAQs)
What are NAFLD and NASH?
Nonalcoholic fatty liver disease (NAFLD) is a condition in which excess fat is stored in your liver. When fatty liver progresses to inflammation and cell damage, the result is non-alcoholic steatohepatitis (NASH). NASH is a serious progressive liver disease where chronic inflammation results in progressive fibrosis or scarring that can lead to cirrhosis, eventual liver failure, cancer and death. Advanced fibrosis is associated with a substantially higher risk of liver-related morbidity and mortality in patients with NASH, and as early as 2020, the disease is projected to become the leading cause of liver transplants in the United States. There are currently no medications approved for the treatment of NASH.
What is the Fatty Liver Foundation?
The Fatty Liver Foundation (FLF) is the first non-profit, voice of the patient organization solely devoted to helping people with fatty liver disease and the more serious version NASH.
What is the mission of FLF?
FLF’s mission is to improve the diagnosis, treatment and support of Americans with fatty liver, NAFLD or NASH through awareness, screening, education and outreach.
What are the goals of FLF?
- Raise awareness on the existence, prevalence, causes, and threat of fatty liver disease in at-risk populations;
- Develop mobile wellness screening to identify people in at-risk populations that have advancing but asymptomatic liver disease;
- Educate patients about the disease as well as dietary and lifestyle approaches that can slow or halt its progression;
- Champion the development of a responsive support system for patients;
- Facilitate the connection between diagnosed patients and clinical trials;
- Build a database of screening test results for epidemiological and interventional research.
Who leads FLF?
Wayne Eskridge is the founder and CEO of the Fatty Liver Foundation. Wayne worked in software and electronics through a 50-year professional career. He held both technical and executive roles in both public and private corporations in businesses of all sizes, from start-ups to Fortune 500 firms.
Wayne was first diagnosed with liver disease in 2010 and, as a result of his own experiences, he became aware of an acute need for an educational resource from a patient perspective. At the core of his motivation is the fact that an estimated 100 million Americans already have fatty liver disease and are unaware of it. While there is currently no medical treatment for NAFLD and NASH, lifestyle changes can be effective in managing the disease. Prevention through education is the only practical solution today. His desire to help others avoid his experiences led him to the decision to become a champion for the patient voice and to create FLF.
What are FLF’s current projects?
Patient-Centric Website
Central to the goal of patient education and outreach is the FLF website, www.fattyliverfoundation.org. The website serves as a reliable source for NAFLD and NASH information, delivery of technical information in a non-technical manner, and serving as a point of contact for patients and caregivers.
A key to adding value to the patient voice is the bringing together of the many individual voices in a way that they may be collectively heard. People with fatty liver disease have not typically been recognized during their asymptomatic phase and often learn of disease with a cirrhosis diagnosis. Through the website outreach, FLF seeks to alert people to the risks and actions that they may take.
SUNN Study
FLF is running a population-based cohort research project — the SUNN Study (Screening for Undiagnosed NAFLD and NASH (clinicaltrials.gov NCT03726827). The purpose of this study is to measure liver stiffness of patients who are coping with chronic health conditions such as obesity, type 2 diabetes, etc., but are not known to have liver disease. It is designed to help measure how many people have asymptomatic undiagnosed liver disease in these high-risk populations.
The SUNN Study is the pilot phase of the FLF’s plan to deploy 400 mobile screening systems nationwide to screen for asymptomatic but advancing liver disease. A challenge facing medical research is a lack of early-stage liver patients who exist but have not been identified and thus are not candidates for clinical trials.
National Fatty Liver Registry
FLF is leading the development of the National Fatty Liver Registry (NFLR) in partnership with various leading organizations to design and implement this strategic and landmark project. The goal is to build the largest database of screening test results for NAFLD and NASH in the world. At scale and full deployment, the target is one million tests per year, capturing valuable data for epidemiological and interventional research.
Where does FLF get its funding?
FLF is a 501(c)(3) tax-exempt organization that relies on the generous contributions of individuals, corporate sponsorships, in-kind donations, and grants to support and sustain its operations in order to advance FLF’s mission and catalytic projects.
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For more information on the Fatty Liver Foundation, please visit www.fattyliverfoundation.org and follow the Fatty Liver Foundation on Twitter (@LiverSaver).
Dancing with the Dark Angel
Change Yourself, Change the World
As published in the Idaho Magazine
There are moments in life you never forget. They don’t fade much with time and you can go back there, even if you would rather not, and remember them with crystal clarity. Whenever I go to a health care facility, it inevitably takes me back to a morning in late December 2010, following my gallbladder surgery. Having been released from recovery a short while previously, I found my Boise hospital bed surrounded by a sea of white coats. Sitting nearby was my wife, silent tears running down her cheeks. The doctors said during my procedure the surgeon had discovered my liver was badly scarred.
“You have stage four cirrhosis,” one said.
Try that on soon after being under anesthesia if you want a hormone rush. I remember the cascade of thoughts clearly: “That can’t be, I’m not an alcoholic. They must have the wrong room. I don’t have any symptoms. Why is my wife crying?”
Denial, so easy for us humans, bloomed in all its glory. But my defenses wilted when the doctor said, “I’m sorry, we have no treatment.”
Kiss and Click Challenge
Amsety and Fatty Liver Foundation Partner to Raise Funds for Liver Health Awareness Through the “Kiss and Click” Challenge
Now, for Millions of Americans, education on liver health is just a Kiss and Click away! Amsety - the first nutrition bar company dedicated to liver health, and the Fatty Liver Foundation - the first U.S. non-profit patient organization dedicated to the growing problem of fatty liver disease in America, are launching the “KISS AND CLICK FOR LIVER HEALTH” challenge.
Through this challenge, Amsety and the Fatty Liver Foundation are determined to promote awareness of the growing problem of liver disease in the US and to encourage donations to the Fatty Liver Foundation to support their liver health initiatives and fund fatty liver disease screenings for those at risk, but unable to afford the examination.
Read moreHow Intermountain Medical Center and Dr. Charlton Saved My Life
There are moments in life that are seared into memory, which you can relive bidden or unbidden. A moment like that for me was the late morning of December 23, 2010.
https://intermountainhealthcare.org/blogs/
After having my gall bladder removed, I was told I had Stage 4 liver cirrhosis. The doctors showed me a picture of my liver taken by the surgeon and it was clearly in trouble. I was astonished to learn my case was pretty typical.
Cirrhosis, the final stage of liver disease leading to end-stage liver failure, commonly doesn’t have any warning symptoms. I’d believed I was in pretty good health. I’d never had any abnormal liver enzymes in my blood work or other symptoms, but because of that picture I arranged for treatment with a gastroenterologist.
I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.”
Read moreAs a stealthy liver disease becomes more common, the search for treatments accelerates
Wayne Eskridge knew he was carrying a few extra pounds, but he still considered himself a pretty healthy guy. When the then-68-year-old electrical engineer underwent gallbladder surgery in 2010, though, his surgeon noticed that Eskridge’s liver didn’t look quite right.
That spurred blood tests — it turned out his liver numbers were a little high — and then a referral to a liver specialist and two biopsies. The diagnosis felt like a death sentence: He had cirrhosis. His liver had become shrunken, knobby, and scarred, and would never heal; ultimately, the only treatment would be a liver transplant.
“It was a shock,” said Eskridge, who lives in Boise, Idaho. “I was dumbfounded. I’d had no clue.”
You can read the original article here
https://www.statnews.com/2016/10/06/stealthy-liver-disease/
Eskridge felt fine, and he didn’t drink alcohol or have hepatitis C1 like many people with liver disease. Instead, the cause was non-alcoholic steatohepatitis, or NASH, which is what leads to cirrhosis in one-quarter of people with the condition. It is increasingly common, for reasons that are unclear, and there is no known cure.
Read more
This MRI Imaging Technique Helped Clinicians Unmask Silent Liver Disease
Nobody wants to be told they are going to die. Yet that’s the prognosis Wayne Eskridge received from his doctors in 2010. The diagnosis was a stage-four case of cirrhosis of the liver. As he and his family despaired over the future, he received another medical opinion, saying this time that he was fine with no liver disease. He was counting his blessings, but later the emotional rollercoaster took another dive when the diagnosis reversed once more. “Over a period of four years I was told I was seriously ill and then told I was not and later I was told that I had a progressive liver disease caused by iron,” Eskridge said from his home in Boise, Idaho. “I did not know where I stood, but I gave seven liters of blood to treat the iron problem. Later that diagnosis was judged to also be wrong. I felt the information I was getting was insufficient but didn’t know where to turn. It’s a journey that drove my wife and me crazy.”
You can read the original story here
https://www.statnews.com/2016/10/06/stealthy-liver-disease/
Read moreThe beast in my belly: Living with a chronic liver disease
On the morning of December 23, 2010, after having my gall bladder removed, I was shown a picture of my liver and told I had a stage 4 liver cirrhosis. It was a powerful and frightening moment – one that is seared into my memory. And one that began more than a half-decade of tests, misdiagnoses, and, eventually, lifestyle changes.
I was astonished that morning to learn that my case was pretty typical. Cirrhosis, the final stage of liver disease leading to liver failure, is commonly reached without any warning symptoms. I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.” My vision of my liver was that of a deadly beast that would kill me. Being told that losing weight and exercising could help didn’t inspire.
You can read the article in the Stanford Medicine Blog Scope here
http://scopeblog.stanford.edu/2016/12/20/the-beast-in-my-belly-living-with-a-chronic-liver-disease/
Read moreSilent killer: Doctors battling liver disease that threatens one-fifth of adults
MURRAY — For five years, Wayne Eskridge carried the same photo.
It wasn't a picture of a loved one. It was a picture of his liver.
Back in 2010, a surgeon went in to remove Eskridge's gallbladder and came out with bad news: He was sure Eskridge had stage 4 liver disease.
This came as a shock. Eskridge, 73, didn't drink. He had no symptoms of liver disease. In fact, the semiretired Boise engineer had hardly ever been sick.
In the weeks and months to pass, doctors performed blood tests, genetic tests and two liver biopsies, which provided conflicting information. One suggested his liver was healthy. Another said his liver was severely scarred. The bloodwork indicated that nothing was wrong, but then a hematologist diagnosed him hemochromatosis — too much iron in his blood.
Read more