FACES OF
LIVER DISEASE American Liver Foundation
Annual Report 2013
About the American Liver Foundation Founded in 1976, the American Liver Foundation (ALF) is the nation’s leading nonprofit health organization for people living with liver disease. ALF is a nationwide network of staff and volunteers that provides outreach, education and patient support services to inform the public about liver health and improve the lives of individuals living with liver disease. The American Liver Foundation’s mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease. 2 American Liver Foundation Annual Report 2013
Chairman’s Letter There is no one face of liver disease. It affects 30 million Americans of all ages, genders, races and life circumstances. There are more than 100 different types. Infants can be born with it and, just like the many types of liver disease, there are many different reasons for contracting it: from genetic to autoimmune, environmental and behavioral and sometimes for no discernible reason at all. But how a person contracts liver disease doesn’t matter. What does is greater public awareness about liver health, disease risk factors and prevention, early detection and treatment. Though liver disease is one of the top 10 leading causes of death for Americans between the ages of 25 and 64, it has limited space on the national stage. Along with obesity, diabetes, heart disease, cancer and Alzheimer’s, liver disease is an important and growing public health challenge. At the American Liver Foundation, we are committed to increasing knowledge about liver disease and advocating for a greater investment in resources devoted to research and patient support. We have helped hundreds of thousands of patients and families gain the assistance that they need – from finding a doctor to learning about new treatments to accessing financial assistance programs. We know that for many liver diseases, lifestyle factors play a part so we developed programs that educate the public about ways to prevent liver disease and maintain liver health. These programs are tailored for people of all ages, whether they are living with or at risk for liver disease, and take place in a variety of settings, including schools, hospitals and corporate settings. We also know that finding future treatments and potential cures depends on the efforts of our nation’s scientists. So a key part of what we do and have done for decades is to fund promising researchers who are unearthing new knowledge that can radically change the course of liver disease. Since 1980, we have invested more than $25 million in more than 800 researchers from many of our nation’s leading academic institutions. And this is bearing fruit. The exciting news from 2013 was the FDA approval of two breakthrough medications that could cure the majority of cases of hepatitis C without the debilitating side effects of older medications. This has transformed the lives of and given hope to millions of people. And more drugs are in the research pipeline not only for hepatitis C but for many other liver diseases. In this report, you will read about four remarkable people: a woman from Massachusetts whose life was forever altered by someone she never met; a preschooler with a rare liver condition and his remarkable mother; a young man changing the course of his disease; and a young nurse who spent a lifetime battling liver disease and who is now giving back to the many people who gave so much to her. These are some of the Faces of Liver Disease. Your contribution is essential to our work. You make a profound difference to ALF and all the people we serve.
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Faces of Liver Disease
Hepatitis C: A Life Saved, A Bond Forged At age 66, Laurel Welch feels like a 21-year-old. That could be because she has the liver of one. Four years ago, this Osterville, Massachusetts resident received a liver from a young man from Turks and Caicos. Laurel needed a liver transplant as a result of the hepatitis C virus, which she believes she contracted in the late 1980s. A baby boomer, Laurel is among a highrisk group. Baby boomers are five times more likely to have hepatitis C than adults in other age groups. What makes hepatitis C particularly damaging is that it is a silent disease. It can be present in the body for decades before symptoms appear. In fact, 75% of the estimated 3.2 million Americans who are infected with hepatitis C do not know that they have it. “My initial symptom was a chronic fatigue,” says Laurel. “At first the doctors thought that there was a problem with my thyroid. But it was hepatitis C, though I was diagnosed before the
virus was officially discovered, when it was called non-A, non-B hepatitis.” The treatments she received did not work and over time the virus attacked her liver to the point where she developed fibrosis and then cirrhosis. Says Laurel, “By 2010, I got really sick and things went downhill fast.” By the summer of 2011, Laurel became critically ill and her daughter and sister had to come in from out of state to care for her. She was in and out of the hospital for multiple procedures and then in early September her doctors and family decided that she should be transferred to Florida where she would have the best chance of receiving a liver. A Boston MedFlight transported her to Jackson Memorial Hospital’s intensive care unit. By that time, Laurel was in liver and kidney failure. She had weeks to live. Then a miracle happened: a liver became available within a week of her arrival at Jackson Memorial. On September 15, 2011, Laurel celebrated her new birthday. With a new liver her kidneys also started functioning again. More recently, Laurel experienced another milestone. Twelve weeks after treatment with the new drug regimen sofosbuvir (brand name Sovaldi) and
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simeprevir (brand name Olysio), Laurel’s hepatitis C virus has cleared her body.
Laurel’s Luck is Another Mother’s Loss Claudette Gibson is a strong woman but her strength and faith would be tested when her 18-year- old son AJ was killed during an altercation while out with friends. AJ, a promising student who was to attend EmbryRiddle Aeronautical University that September, suffered a massive brain bleed and would not recover. During the lowest point of her life, his mother made the decision to donate eight of AJ’s organs so that others might live. “She gave him life and he gave me life and we will all be connected in a way that words can’t describe,” says Laurel who met Claudette in 2012. Adds Claudette, “We are sisters – our bond transcends culture, ethnicity and race. This is AJ’s legacy and turns our greatest tragedy into one of life’s greatest gifts.” To learn more about organ donation, visit the Donate Life website at donatelife.net.
Faces of Liver Disease “The good news is that, for the first time, there are new medications that are gamechangers in treating hepatitis C and several more are in the pipeline. We now have the opportunity to cure more than 90% of patients with hepatitis C and offer them a better quality of life while undergoing treatment.” Nancy Reau, MD
Associate Professor of Medicine University of Chicago Co-chair , American Liver Foundation National Medical Advisory Committee
Calling All Baby Boomers – You Need to Get Tested for Hepatitis C As baby boomers grow older, their health concerns may focus on heart disease, cancer, diabetes and Alzheimer’s disease. But an overlooked area, and one that they should think more about, is liver disease, including hepatitis C. Seventy-five percent of the 3.2 million Americans who have the virus are baby boomers, those born between 1945 and 1965. Why are they at risk? According to Nancy Reau, MD, associate professor of medicine at the University of Chicago and cochair of the American Liver Foundation’s national medical advisory committee, there are several reasons: One is that blood and blood products were not screened for hepatitis C until 1992. So individuals who received blood transfusions, organ transplants or other invasive medical procedures before that time could have been exposed. Lifestyle choices are another factor. Boomers came of age before public awareness about the risks of shared needles and unprotected sex. And younger generations do not get a pass. Young adults should be aware that getting unsafe tattoos or piercings, and IV drug use – even one time – increases their risk of contracting hepatitis C as it does for individuals of any age. Hepatitis C is called the silent killer because it can be present in the body yet take decades for symptoms to appear. So people have no idea that they are infected and may unknowingly pass it on to others. Sharing razors, nail clippers and even mistakenly using a family member’s toothbrush can spread the virus.
When symptoms do emerge, they may present as fatigue, nausea, achiness, abdominal pain or flu-like symptoms. “We are seeing much higher rates of liver disease, such as cirrhosis, liver cancer and the need for liver transplants as a consequence of hepatitis C,” says Dr. Reau. “The longer it goes untreated in your body, the more time it has to damage your liver.” In fact, hepatitis C is the most common reason for liver transplants in the United States. However, the good news is that there are new medications that are game-changers in treating hepatitis C and they have generated a great deal of excitement among doctors and patients. “With drugs like sofosbuvir (Sovaldi), simeprevir (Olysio) and several more in the pipeline, there is an opportunity to cure more than 90% of patients infected with the virus and offer them a better quality of life while undergoing treatment,” says Dr. Reau. “These drugs really have been life-changing for many patients. But first people need to know that they carry the virus.” The Centers for Disease Control and Prevention and the American Liver Foundation encourage individuals born between 1945 and 1965, as well as all at-risk populations, to be tested for hepatitis C. For more information about hepatitis C, including the latest treatments, finding a physician and supportive care services, contact the American Liver Foundation’s National Helpline 1-800-GO-LIVER (1-800-465-4837) and visit its hepc123.org and liverfoundation.org websites.
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Faces of Liver Disease
Aiden Ascending At only 3 ½ years old, Aiden has been hospitalized at least 10 times, had countless doctor visits and has undergone two liver transplants. Yet, at a recent trip to Camp Sunshine in Casco, Maine, you would be hard-pressed to keep up with him. Aiden was born with a rare liver disease called Ornithine Transcarbamylase (OTC) Deficiency. It is an inherited disorder that causes high levels of ammonia to build up in the blood, which can travel to the brain resulting in coma, brain damage and death. This disorder occurs in about 1 in 80,000 births and is typically more common in boys whose mothers carry the gene. However, one-third of males born with this disorder have a new gene mutation, which was the case with Aiden. Ammonia forms when protein is broken down by the intestines and converted to urea, which then passes out of the body through urination. In the case of people with OTC Deficiency, their liver is unable to do this and ammonia accumulates in the blood. A normal ammonia range is 15-45 micrograms per deciliter. Aiden’s was 700 within 2 days after birth. “In less than 24 hours after Aiden was born, the pediatrician
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and I could see that something was off,” says his mother, Nicole McNair. “At first, we thought he had jaundice so he was placed under heat lamps but his condition continued to deteriorate rapidly.” Due to the diligence of the pediatrician from New York Methodist Hospital, he was able to identify Aiden’s high ammonia level and advised that Aiden be transferred to New York’s Mount Sinai Medical Center, one of the best places to be treated for this disease. Tests at Mount Sinai confirmed Aiden’s OTC Deficiency diagnosis. For two years, with close follow up from Aiden’s doctors at Mount Sinai, the disorder was managed with medication and a strict, plant-based protein diet. But life for Aiden was very unpredictable. Even with the medicines and being watched closely by Mount Sinai’s renowned metabolic team, his ammonia levels would unpredictably spike. “For most children a cold is not life-threatening, but for Aiden, a cold, fever and even teething issues, could potentially put him in the hospital.” The decision was then made to place him on the liver transplant list through Mount Sinai’s Recanati/ Miller Transplantation Institute. Aiden underwent his first liver transplant on June 5, 2013, but due to complications within the first six weeks, three months later, Aiden received a second liver on September 1, 2013.
Faces of Liver Disease
“Great strides have been taken in the past decade to increase knowledge on the causes of and treatment options for many different pediatric liver diseases. These accomplishments are possible based on state-of-the-art genetic and immunological research tools, as well as national consortiums working together to offer targeted diagnostic and therapeutic interventions.” Cara L. Mack, MD
Associate Professor of Pediatrics Children’s Hospital Colorado University of Colorado School of Medicine 2006 American Liver Foundation Grant Recipient
“We are beyond grateful to the families who so generously donated their children’s organs so that Aiden could live,” says Nicole. Nicole, Aiden, his brother Simeon and father Roland are giving back by raising money to support the work of the American Liver Foundation. As for Aiden, he dived into all the activities at Camp Sunshine, which provides a free camp experience to children with lifethreatening illnesses as well as parents and caregivers. This camp provided Aiden the opportunity to just be a kid and he enjoyed water activities, arts and crafts, story time and just running around with the other kids. “Developmentally, his delays are primarily speech and feeding,” says Nicole. But he is catching up and in September, for the first time, he will be able to attend school at St. Mary’s Hospital for Children where both his medical and educational needs can be met.” Go Aiden!
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Faces of Liver Disease Seeing His Future and Changing Course Ben Goodman has his father’s brown eyes, dark hair and a love for history and politics. But this staff assistant for a member of the U.S. House of Representatives also has the beginnings of a disease that killed his father: non-alcoholic fatty liver disease (NAFLD). Ben’s father, Michael died at the age of 51 from a progressive form of NAFLD called non-alcoholic steatohepatitis (NASH). NAFLD is the most common cause of chronic liver disease in the United States and while it is largely associated with lifestyle factors, such as obesity, there is also a strong genetic component. According to a study by the University of California, San Diego, researchers, family members of children diagnosed with NAFLD are at high risk for the disease and should be tested for it as part of a routine medical examination, even if they don’t show symptoms, Throughout Ben’s teen years, he watched as his father experienced bouts of encephalopathy, numerous hospital stays and hepatic coma, ultimately dying when Ben was 17. Losing his father at such a young age took an enormous toll on Ben. It also took a toll on his mother who not only had to hold the household together and take care of her only child, but commute from Maine to Indianapolis where her husband was being treated. Unfortunately, Ben was also diagnosed with fatty liver disease in 2005 at the age of 15. But he manages his disease by living a healthy lifestyle. He exercises every day and follows a healthy diet and has lost 60 pounds since his diagnosis. “I am happy that I can work to change the course of this disease – and do it without prescription medication,” says Ben. “At the time of my diagnosis, I realized that I stood at a fork in the road – down one path was my future if I didn’t take steps to prevent it: the build-up of toxins in my blood that would cause confusion, the buildup of abdominal fluid that would need to be drained, the loss of muscle mass and a place in line for a liver transplant.” Says Ben: “Down the other path was the promise of a healthy and full life, one that I have the potential to control. And one where my children would be spared from watching me slowly die and also be spared from contracting the disease. That’s the life I wanted for myself.”
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Faces of Liver Disease
Ask the Expert: Rohit Loomba, MD Non-Alcoholic Fatty Liver Disease
In the national discussion about the health effects of obesity, an emerging and quite serious health consequence is often overlooked: non-alcoholic fatty liver disease (NAFLD). The condition is estimated to affect more than 30% of people in the United States. NAFLD can lead to cirrhosis (end-stage scarring) and causes more liver failure, transplants and liver cancer than alcohol. As obesity rises, so will the cases of fatty liver disease. It is expected to reach epidemic levels in the United States, affecting some 50% of Americans by 2030. The good news is that the effects of fatty liver disease are reversible in most people. Rohit Loomba, MD, associate professor of clinical medicine and associate director of clinical research at the University of California, San Diego, is an expert on nonalcoholic fatty liver disease and related conditions. Dr. Loomba is also a member of the American Liver Foundation’s national medical advisory committee and national board of directors. Here he provides answers to many of the questions of concern to patients and families.
What is Non-Alcoholic Fatty Liver Disease? Non-Alcoholic fatty liver disease is currently the most common liver disease in most of the Western world. It occurs when there is a buildup of extra fat in liver cells (steatosis) that is not caused by alcohol. Although it is normal for the liver to contain some fat, the term “fatty liver” is used when a person’s liver is made up of more than 5% fat. NAFLD is strongly associated with obesity and insulin resistance (pre-diabetes or diabetes). In the majority of patients with NAFLD, it is not harmful and they do not develop progressive liver disease. However, in some patients with NAFLD, inflammation of the liver occurs, resulting in the accumulation of scar tissue (fibrosis). When this happens, the disease is referred to as non-alcoholic steatohepatitis (NASH). For some patients, NAFLD can progress to NASH and ultimately to cirrhosis and liver failure.
Who is most at risk? NAFLD most often develops in people who are overweight or obese, have type 2 diabetes, high cholesterol, high triglycerides, obstructive sleep apnea or polycystic ovary disease. NAFLD can be found in more than 40-50% of obese individuals; Asian Indians and Hispanics have the highest rates of NAFLD among the various ethnic groups. Additional risk factors include increasing age, hypertension and weight gain. A family history of diabetes is linked to advanced liver disease in
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Faces of Liver Disease NAFLD. In addition, familial aggregation of NAFLD is seen suggesting that there are certain genes that may influence disease susceptibility. PNPLA-3 genotype is one such genetic variant that has been shown to be associated with NAFLD.
Does NAFLD affect children? NAFLD is present in approximately 10% of children in the United States. Though the incidence of obesity in children has fallen, about one-third are still overweight or obese.
What are the symptoms of NAFLD? NAFLD is a silent liver disease, often asymptomatic in its early stages. Symptoms typically include fatigue; nausea; abdominal discomfort; yellowing of the skin and eyes (jaundice); swelling of the legs (edema) and fluid buildup in the abdomen (ascites). Mental confusion (hepatic encephalopathy) may be seen in end-stage liver disease. In many cases, the first signs of illness do not occur until significant liver damage has developed.
How is NAFLD diagnosed? NAFLD is often diagnosed during evaluation for abnormal liver tests found during routine blood work. NAFLD may be identified via imaging (ultrasound) or on a liver biopsy. When diagnosing NAFLD, it is necessary to inquire about excess alcohol consumption in order to rule out alternative causes.
How is NAFLD treated? Drugs are in development, but currently there are no medications for fatty liver disease. Since obesity is a major risk factor, we recommend diet and exercise with the goal of at least a 7% reduction in body weight. Most nutritional intervention guidelines for NAFLD recommend a moderately low-calorie, low-carbohydrate diet of about 1,000-1,200 calories per day for women and 1,200-1,600 calories per day for men. Exercise recommendations call for approximately five 30-minute sessions of moderate activity each week, depending on a person’s age and medical status. Vitamin E and a medication called pioglitazone (brand name Actos) are also used in select cases after discussing risks, benefits and alternatives with the patients.
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Will a person who has NAFLD ultimately need a liver transplant? If treated early with healthy lifestyle changes, fatty liver disease can be reversed before severe liver damage occurs. But when left untreated, NAFLD can lead to liver failure and the need for a liver transplant in a small subset of patients.
What promising research is underway? Aside from diet, will there be a way to prevent NAFLD? The good news is that experts from various fields including cell biologists, lipidologists, geneticists, microbiologists and bioinformaticians along with clinicians, such as nutritionists, exercise physiologists, endocrinologists and hepatologists, are all actively engaged in finding the pathogenetic mechanisms underlying NASH and how to reverse the condition. Several newer treatment strategies are being evaluated. Together, we will find a cure for this disease.
Faces of Liver Disease
The Headline? Happiness! To look at Alison Cubbellotti now, you would never know all that she and her family have been through. A healthy 25-yearold from Trumbull, Connecticut, only five years ago she was near death. Alison had been suffering for most of her life with primary sclerosing cholangitis (PSC), a chronic disease that slowly damages the bile ducts. In patients with PSC, the bile ducts become blocked due to inflammation and scarring, which causes bile to accumulate in the liver, where it gradually damages liver cells and causes cirrhosis. As cirrhosis progresses, the liver loses its ability to function. That’s exactly what happened to Alison. She was only 9-yearsold when she was diagnosed with PSC and Crohn’s disease and battled both diseases throughout her childhood. By the time Alison was a junior in high school, the PSC was severely attacking her liver and she was hospitalized more times than she could count. With determination and perseverance, Alison attempted to start college at Sacred Heart University numerous times but, among other symptoms, she had several incidences of build up of fluid in her lungs
and was experiencing liver failure. While the medical team was able to stabilize her repeatedly, by her sophomore year she had trouble remembering things due to dangerous levels of ammonia in her blood and she withdrew from school. She was also put on the liver transplant list. “That was really hard,” says Alison. “I had dreams of becoming an RN and now I wasn’t even going to be able to graduate from college.” Family members and friends were tested to see if they could donate a portion of their livers but only her brother was a match. The rollercoaster continued for the family when surgeons aborted the transplant surgery, already in progress, when it was revealed that her brother Stephen would have been in danger due to the location of an artery near his liver. The family was devastated, especially Stephen. In desperation, Alison’s parents sent a final plea for help to everyone they knew including the Sacred Heart University email network. That message reached 21-year-old John Vales, a business administration major. With absolutely no connection to Alison, other than attending the same college, John selflessly donated a piece of his liver
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Faces of Liver Disease to her. “The mother’s plea really got to me. All I could think about was that if this were my little sister, I would hope that someone would do the same,” says John. “I was just doing the right thing.” At this point, Alison was bedridden with fluid in her abdomen and lungs, she could not eat and was in constant pain. Doctors said that she had two months to live. On October 19, 2009, Alison began her new life when her transplant was successfully performed at Yale-New Haven Hospital. Further complications ensued. Alison needed three additional surgeries to ensure her health and that of her new liver. Today, she is healthy.
Now Alison and John and their families are extremely close. Many people don’t realize that liver transplants can come from living donors. But with more than 17,000 Americans waiting for donated livers to become available, living donor liver transplants have become a viable option for people suffering from end-stage liver disease. As for Alison, she is in the hospital every day. But this time she isn’t the patient. On July 3, 2014, the day before her birthday, she officially became an RN giving to others what her doctors and nurses gave to her: Health, hope and happiness.
“Thank you just isn’t enough to say to someone who has saved your life,” says Alison. And she wasn’t even able to do that initially as John had requested to be anonymous. However, the day John was being discharged, he asked to meet Alison. “It was like something out of a movie. I could see the man who saved my life outside my room and I became absolutely speechless. All we both could do was cry and hold hands; our parents did the same.”
Join Alison and her many friends who participate in the American Liver Foundation Liver Life Walks. Alison’s team, “Ali’s Angels,” has raised more than $75,000 for ALF’s Connecticut Division. To find a Liver Life Walk in your area, please visit: liverfoundation.org/walk.
“It’s a really exciting time for PSC research and treatment. Scientists are learning so much more about the genetic and immunologic mechanisms of PSC. Soon, doctors will have more medications in their arsenal directed at inhibiting the immune response that causes inflammation of the bile ducts and preventing buildup of toxic bile acids. This will help stop the scarring that leads to liver failure so that liver transplantation will no longer be necessary.” Hillel Tobias, MD, PhD
Clinical Professor, Department of Gastroenterology NYU Langone Medical Center Co-chair, American Liver Foundation National Medical Advisory Committee
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Education and Outreach “Merck is deeply committed to helping people with chronic hepatitis C and we value our collaboration with the American Liver Foundation. The ongoing support provided by ALF through their HEPC123 program is commendable.� Francois Lilienthal, MD, MBA
General Manager & Global Commercial Leader, Hepatitis Merck & Co., Inc.
The American Liver Foundation achieved significant programmatic milestones in fiscal year 2013, reaching thousands of individuals through its education programs, support services and outreach activities.
Education One of the most powerful ways of maintaining liver health and preventing liver disease is education. It is at the heart of everything the American Liver Foundation does. Many forms of liver disease are preventable and many more are curable if detected early. The American Liver Foundation conducts a variety of education programs about liver health and wellness and ways to prevent, treat and live with liver disease. These programs are tailored for people of all ages, whether they are living with or at risk for liver disease. Love Your Liver is an interactive liver wellness education program targeted to elementary, middle and high school students. The program educates students about the liver and the actions they can take to maximize their liver health and prevent liver disease. Programs are taught in classroom settings as well as at after school programs, summer camps and any youth group-related locations. ALF staff and volunteers reached more than 8,600 school-aged students in 2013. The Viral Hepatitis program targets individuals who have hepatitis C or are at high risk of infection. Participants in the program learn about the liver, liver disease (specifically hepatitis C, as well as hepatitis A and B), risk factors, prevention, treatment options and other disease management strategies. The Viral Hepatitis program also provides perspectives from individuals living with hepatitis C. The program is held in several settings, including at communitybased organizations, detox centers, correctional institutions, hospitals and faith-based organizations. More than 6,100 people participated in the program in 2013. The Liver Wellness program provides a general overview of liver disease and liver wellness, covering a variety of topics including information about the liver, liver diseases as well as the importance of maintaining a healthy lifestyle to ensure good liver health. Liver Wellness is presented in community settings such as libraries, hospitals, civic organizations and in corporate settings as part of employee wellness programs. ALF presented 61 programs reaching more than 1,100 participants in 2013. American Liver Foundation Annual Report 2013  13
Education and Outreach Research Approximately $125,000 was provided to 10 early-career scientists in 2013. These researchers are adding to our knowledge about liver disease with the goal of preventing its onset and finding better treatments and cures. Read about the 2013 grant recipients on page 18.
Advocacy In 2013, ALF participated in the 6th Annual Liver Capitol Hill Day sponsored by the American Association for the Study of Liver Diseases. ALF brought a contingent of patient advocates who called on Congressional leaders to make liver disease research a funding priority and improve access and delivery of care. ALF was also a proponent of testing baby boomers for hepatitis C, which led to new state laws requiring hospitals and health service providers to offer testing to all patients born between 1945 and 1965.
Support Services The American Liver Foundation provides the public with a wealth of information about liver disease prevention, screening/testing and treatment. It operates a National Helpline to answer questions and three educational websites: liverfoundation.org and two that are dedicated to hepatitis C and hepatic encephalopathy, hepc123.org (created in 2012) and he123.org (created in 2013).
National Helpline ALF’s 1-800-GO-LIVER (1-800-465-4837) National Helpline is a go-to source for patients and families providing answers to and guidance on the public’s many questions and concerns. This includes how to find a doctor, learn about the latest treatments and information about financial assistance programs and clinical trials. In 2013, ALF’s National Helpline responded to more than 4,400 people seeking information. For callers with limited English proficiency, the Helpline also offers real-time interpretation services in 20 languages.
Educational Materials ALF produces educational materials on 31 liver health topics – available to the public at no cost -- including biliary atresia, cirrhosis, hepatitis C, fatty liver disease and liver cancer. ALF also offers information about liver health and wellness, diet, managing medications, what to do when you are newly diagnosed and financial assistance resources. Materials are available in many languages, including Spanish, Chinese and Russian.
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Division Highlights The strength of the American Liver Foundation and the hope of millions afflicted with liver disease lie in its nationwide network of divisions and offices located throughout the United States. Each division offers a wide range of educational programs, special events and support for patients, family members, medical providers and the community.
Following are some highlights from 2013: Connecticut On January 11, 2013, after more than 16 weeks of dedicated training, 14 runners from the New York, New Jersey and Connecticut area came together to run in the Walt Disney World® Marathon Weekend as part of the Liver Life Challenge Connecticut Division team. The event raises awareness about liver disease and funds for the American Liver Foundation. The team was comprised of liver transplant recipients, those who lost a loved one to liver disease, health care providers, transplant surgeons, pharmaceutical representatives, caregivers, family members and friends. They collectively ran 275 miles over two days and raised $46,000 for the American Liver Foundation’s Connecticut Division.
Desert Southwest Flavors of Phoenix, held on May 23, 2013, was a spectacular evening that brought together the best chefs in the Valley of the Sun. Attendees and sponsors say that this is their favorite event in Phoenix. With 35 chefs and tables, Flavors of Phoenix was among the largest Flavors event in ALF’s history. By far, the most compelling part of the evening was the Fund-aGrant speaker: an 18-year-old girl who was the first pediatric liver transplant recipient in the Phoenix area. Flavors of Phoenix raised an impressive $248,000. The Mayo Clinic was once again the presenting sponsor.
Greater Los Angeles The Greater Los Angeles Division was proud to partner with the Children’s Hospital of Los Angeles on the 3rd Annual Biliary Atresia Day. The event, held in October 2013, provides families and children an opportunity to meet others affected by this disease and share experiences. Families also learn about current research about biliary atresia, which affects approximately one out of every 18,000 infants.
Greater New York Launched on Long Island more than 20 years ago, the Greater New York Division’s Annual Re-Birthday Celebration brings together transplant recipients and their families as well as donor families and clinicians to celebrate the gift of life and the miracle of transplantation. At the April 2013 event, Dr. Priya Grewal, assistant professor of medicine at Mount Sinai Hospital, talked about liver treatment options and advances in liver transplantation. The mother of a donor spoke about her son, a soldier who had recently returned from Iraq and was killed by a car while crossing the street. Attendees shared their stories as they celebrated their new birthdays and honored the donors who gave the ultimate gift of life.
Great Lakes On February 7, 2013, the Great Lakes Division held its 10th Annual Academic Debates Continuing Medical Education program, which brought together young clinicians to present their positions about complex topics to an audience of their peers, mentors and senior liver specialists. More than 100 were in attendance. Teams of young clinicians representing leading Chicago and Michigan academic medical centers debated whether it is ethical to deny liver transplants to patients with acute alcoholic hepatitis; whether, by 2015, the standard treatment for hepatitis C will be an oral, interferon-free medication; and whether patients with normal ALT levels and high viral loads, who are at increased risk for liver-related complications, should be treated for hepatitis B. The debating teams represented John H. Stroger Cook County Hospital; Loyola University Medical Center; Northwestern Memorial Hospital; Rush University Medical Center; the University of Chicago and the University of Michigan.
Heartland The Heartland Division had a record-breaking year in 2013. Its annual Liver Life Walk Cleveland event raised $92,783 for the American Liver Foundation. One thousand walkers and 51 teams participated.
Mid-America The Gift of Life Fashion Show, held on April 12, 2013, showcased spring fashions modeled by women and children, transplant recipients, living organ donors and local media celebrities. Troy and Amy Wildhaber, parents of Zac Wildhaber,
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Division Highlights who lost his life in a car accident, were the keynote speakers. As many as 55 individuals were given the gift of life from Zac’s donation. The event resulted in more than 200 individuals signing up for the Missouri Organ and Tissue Donor Registry. World Wide Technology Inc. was a presenting sponsor.
Mid-Atlantic The Ninth Annual Biliary Atresia Education Day for families was held on April 28, 2013, at the Children’s Hospital of Philadelphia. The purpose of the event was to update families and providers about the developments in biliary atresia research and clinical care. The event was one of the division’s largest with around 100 guest and featured lectures, panel discussions and patient stories.
Northern California Four hundred life sciences, health care and policy leaders, along with family and friends, celebrated the contributions and achievements of three individuals who are developing biotechnology, improving patient therapies and advancing public policy. The 2013 honorees were: Grant Heidrich, partner emeritus of the Mayfield Fund; Carol L. Brosgart, MD, senior advisor on science and policy of the Viral Hepatitis Action Coalition and clinical professor in the Department of Epidemiology & Biostatistics at University of California, San Diego; and Martha Saly, executive director of the National Viral Hepatitis Roundtable. Since 1999, 39 individuals have received the Salute to Excellence Award and nearly $5 million has been raised to benefit the American Liver Foundation.
New England On November 1, 2013, the New England Division hosted the 23rd Annual Irwin M. Arias Symposium: Bridging Basic Science and Liver Disease. A distinguished panel of leading biomedical scientists and physicians presented topics specific to liver biology and disease to an audience of students, fellows and scientists. Dr. Arias, an emeritus professor of medicine, Albert Einstein College of Medicine; emeritus professor of physiology, Tufts University School of Medicine; and emeritus senior scientist, National Institutes of Health, is a long-time supporter and friend to ALF. He has published more than 450 research papers, reviews, book chapters and position papers. His wide-ranging research focuses on bringing advances in basic science to a better understanding about liver function and disease, both acquired and inheritable.
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Pacific Coast The Pacific Coast Division conducted its 16th annual Liver Wellness Conference on September 21, 2013. The conference focused on hepatitis C and liver wellness with an emphasis on hepatic encephalopathy (HE) and the prevention, management and treatment of liver disease. Speakers included Lisa Nyberg, MD, Kaiser Permanente, who discussed alcoholic liver disease and Rohit Loomba, MD, University of California San Diego Health System, who discussed nonalcoholic fatty liver disease prevention and treatment. Paul Pockros, MD, and Catherine Frenette, MD, of the Scripps Clinic, highlighted hepatitis C and HE treatment options; Tarek Hassanein, MD, Southern California Liver Centers, talked about risk factors and treatment options for liver cancer; and Christopher Marsh, MD, Scripps Clinic, discussed liver transplantation – success rates, ways to avoid a liver transplant and the importance of organ donation. More than 115 health care professionals, patients and caregivers attended the event, which was sponsored by Gilead Sciences, Salix Pharmaceuticals, Scripps, Novartis, Avella Specialty Pharmacy, Bristol Meyers-Squibb, Bayer Healthcare and the University of California San Diego Health System.
Rocky Mountain The Peak of Excellence Award was presented during Flavors of Denver 2013 to the University of Colorado Hospital Hepatology and Liver Transplant Teams who are leaders in patient care and research. The Peak of Excellence Award honors an individual or organization that demonstrates the highest levels of dedication, commitment and talent to the American Liver Foundation in a meaningful way through advocacy, education and fundraising, and forges paths of leadership for others to follow in the fight against liver disease. The inaugural Peak of Excellence Award was presented in 2012 to John Goff, MD, clinical professor of medicine at the University of Colorado School of Medicine, who was instrumental in establishing the American Liver Foundation Rocky Mountain Division in 1999.
Upper Midwest In 2013, the Upper Midwest Division held its 10th year of the Minnesota Case Studies, a professional educational program that features interactive presentations and meaningful peerto-peer dialogue about current diagnosis strategies and treatment options for patients affected by liver disease. More than 60 liver specialists attended.
Funding the Mission
In 2013, the American Liver Foundation hosted more than 59 events across the country. These events brought together local communities in support of a common goal: to help raise awareness and further the mission of the American Liver Foundation to promote liver disease education, research and advocacy. Approximately $6,040,140 was raised in 2013.
Flavors Flavors is the American Liver Foundation’s signature event, a culinary experience that goes beyond the traditional gala and provides each table of attendees with a local chef who prepares a multi-course dinner tableside. The event showcases the signature dishes of ALF’s culinary experts and takes guests beyond the usual restaurant fare. Supporters unleash their inner “foodie” and experience a distinct evening of dining while helping to fund the research, education and advocacy efforts of the American Liver Foundation. Flavors was first created in 1991. Today the event is hosted by ALF in 20 cities across the country and raises millions of dollars annually to support the work of the American Liver Foundation. ALF’s culinary masters include local celebrity chefs, James Beard Award winners and even a past winner of Bravo’s Top Chef.
Liver Life Walk More than a walk, the Liver Life Walk unites communities in the fight against liver disease. Funds raised by the Liver Life Walk are used for life-saving research, education, support and advocacy. In 2013, more than 13,000 walkers from coast-to-coast pounded the pavement to change the face of liver health, bringing much-needed awareness and financial support to the needs of millions of Americans who are battling more than 100 different types of liver disease.
Liver Life Challenge The Liver Life Challenge brings together teams from across the country to participate in endurance events. The American Liver Foundation Liver Life Challenge participants have conquered everything from marathons to mountain climbs and generated millions of dollars in the process. Run for Research, a Boston Marathon training team, is the organization’s longest-running event.
American Liver Foundation Annual Report 2013 17
Supporting Research Research is integral to the work of the American Liver Foundation and is essential to finding new ways to prevent, treat and cure liver disease. Since 1980, the ALF Research Awards Program has provided more than $25 million in grants funding to more than 800 promising scientists who are making the study of liver disease their life’s work. These researchers are contributing to the knowledge of how liver diseases develop and progress. Their discoveries go beyond the laboratories and into clinical practice, aiding in drug development and other interventions that will ensure the health of millions of Americans. In fact, ALF-funded scientists were directly involved in research that led to the approval of the new hepatitis C medications.
Hans Popper Memorial Postdoctoral Research Fellowship Award Nicole Paulk, PhD Stanford University Department of Pediatrics and Genetics Mentor: Mark Kay, MD, PhD Novel strategies to expand the adeno-associated virus repertoire for therapeutic liver gene therapy
In 2013, ALF awarded approximately $125,000 to 10 earlycareer scientists from many of the nation’s leading academic institutions.
Irwin M. Arias, MD, Postdoctoral Research Fellowship Award Ingmar Mederacke, MD Columbia University Mentor: Robert Schwabe, MD The contribution of hepatic stellate cells to chronic liver injury
Our Grantees: Alexander M. White III Postdoctoral Research Fellowship Award James Squires, MD Cincinnati Children’s Hospital Medical Center Mentor: Jorge Bezerra, MD Pathogenic mechanisms of injury of intrahepatic bile ducts in experimental biliary atresia Charles Trey, MD, Memorial Postdoctoral Research Fellowship Award Lucia Russo, PhD University of Toledo Center for Diabetes and Endocrine Research Mentor: Sonia Najjar, PhD Hepatic Ceacam 1 links insulin resistance to NASH Congressman John Joseph Moakley Postdoctoral Research Fellowship Award Michael Deutsch, MD NYU School of Medicine Mentor: George Miller, MD The role of C-type lectin receptors dectin and mincle in acute concanavalin-A induced hepatitis Fund for the Cure – Hepatitis Postdoctoral Research Fellowship Award Maryam Ehteshami Akbari, PhD Emory University Mentor: Raymond Schinazi, PhD, DSc In vitro characterization of novel NS5B polymerase nucleoside analog inhibitors for the treatment of hepatitis C
18 American Liver Foundation Annual Report 2013
Herman Lopata Memorial Hepatitis Postdoctoral Research Fellowship Award Marion Depla, PhD Centre de Recherche du CHUM, Hospital St. Luc-Montreal Mentor: Naglaa Shoukry, PhD Transcriptome analysis of acute hepatitis C
PSC Research Fund Postdoctoral Research Fellowship Award Alexandra Menchise, MD Cincinnati Children’s Hospital Medical Center Mentor: Alexander Miethke, MD The regulation of adaptive immune responses in a murine model of primary sclerosing cholangitis Roger L. Jenkins, MD, Postdoctoral Research Fellowship Award Audrey Lau, MD University of California, San Francisco Mentor: Sheri Krams, PhD Hepatic plasmyacytoid dendritic cells, microRNA and transplant tolerance Thomas E. Starzl, MD, Postdoctoral Research Fellowship Award Lisa Van Wagner, MD, MS Northwestern University Feinberg School of Medicine Mentor: Michael Abecassis, MD, MBA Derivation and validation of a cardiac risk index for use in liver transplantation
Supporting Research “ALF’s advocacy for research and support of young investigators has been vitally important in the fight against liver diseases. ALF’s role is now even more important. While we celebrate the remarkable success of the new hepatitis C therapies, we also need to keep up momentum and encourage the next generation of scientists to tackle many remaining challenges, from basic understanding of liver biology and pathogenic mechanisms to developing next generation diagnostics and treatments.” Charles M. Rice, PhD
Maurice R. and Corinne P. Greenberg Professor in Virology Head of the Laboratory of Virology and Infectious Disease The Rockefeller University
American Liver Foundation Honors Renowned Hepatitis C Researcher Charles M. Rice, PhD, with its Distinguished Scientific Achievement Award The recent advances in the treatment of hepatitis C are due, in large part, to our nation’s scientists. Key among them is Charles Rice, PhD, the Maurice R. and Corinne P. Greenberg Professor in Virology and head of the Laboratory of Virology and Infectious Disease at The Rockefeller University. Dr. Rice, who is also executive and scientific director of the Center for the Study of Hepatitis C, has been conducting research on hepatitis C since the virus was first discovered in 1989. His work focuses on identifying new ways of blocking hepatitis C infection by studying how the virus replicates and understanding host responses to infection. Dr. Rice and his colleagues developed the first genetically humanized mouse model that could become infected with the hepatitis C virus, which allows scientists to study the whole life cycle of the pathogen and gain a greater understanding about the biology of hepatitis C. This could pave the way for additional treatments and preventative vaccines. Dr. Rice was presented with the American Liver Foundation Distinguished Scientific Achievement Award at the 2013 Annual Awards Reception hosted by the American Association for the Study of Liver Diseases and the American Liver Foundation. The honor is given to a scientist who has made a major contribution to liver disease research in basic science or in its application towards the prevention, treatment or cure of liver disease.
American Liver Foundation Annual Report 2013 19
Join Us and Give Why I Support ALF I support the American Liver Foundation because my family and I know first-hand what a devastating diagnosis liver disease can be. In my case, primary sclerosing cholangitis (PSC) destroyed my health. I experienced chronic fatigue, constant bile duct infections, jaundice, repeated hospitalizations, liver failure and ultimately a liver transplant, which I received on April 4, 2007. From that miraculous day forward, I was given an opportunity to give back. What better way to give back to others than through supporting the American Liver Foundation (Heartland Division) that gave so much to me? The American Liver Foundation was there for my family and me every step of the way, providing the latest information about PSC, supportive services and an opportunity to meet others living with the disease. My family and I wanted to pay it forward and we did by becoming actively involved in the local ALF Heartland Division. We formed a Liver Life Walk team called “Marty Mullen’s Mob” and also attend the annual Flavors event. I have served on the ALF division board of directors and am now the board chairman. Each year, my family hosts a gourmet wine-tasting dinner and auction to benefit the Liver Life Walk Cleveland, which has raised more than $75,000 to date. It gives us great pleasure to raise funds to support the mission of ALF and to promote awareness of liver disease. Marty Mullen Cleveland, Ohio
Salix Pharmaceuticals, Inc. is a leading U.S. specialty pharmaceutical company focused on products that treat gastrointestinal (GI) disorders. We are passionate about providing solutions to problems that affect millions of Americans every year, striving to address unmet treatment needs for people with GI disorders. A focus on liver disease and a shared commitment to solving the unique problems that afflict patients and caregivers have connected Salix and the American Liver Foundation. Hepatic encephalopathy (HE), a complication of liver disease, has been a particular focus of the partnership due to limited awareness and understanding by patients and caregivers. Working together over the past several years, both ALF and Salix have been able to reach more patients than ever before and provide more tailored outreach and more specific education on HE. The expanded breadth of offerings made possible by the collaboration have included patient and caregiver webinars, disease state education materials, a Web micro-site, as well as a documentary film directed by an Academy Award-winning director that sheds light on life with liver disease and HE for four families. These efforts have gone a long way in creating awareness and understanding about what to expect when facing liver disease. But they are only just the beginning, as both organizations are committed to continuously expanding the collaboration to do whatever they can to make life with liver disease a little easier. Daniel P. Lundberg Senior Vice President, Marketing Salix Pharmaceuticals, Inc.
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Join Us and Give With your support, the American Liver Foundation can continue to educate the public about liver health and wellness, provide assistance to families and caregivers and work to find better treatments and cures. Please help us continue this vital work by giving to the American Liver Foundation at www.liverfoundation.org/donate.
Program Services Patient Services $1,299,258
22.5%
25.7%
23.2% 10% 18.6%
Public Education $1,176,519 Community Services $1,139,133 Professional Education $939,090 Research $505,152
Program Expenses
19.1%
Program Services $5,059,152
8% 72.9%
Fundraising $1,326,477 Management $555,997
American Liver Foundation Annual Report 2013  21
Financials Balance Sheet Assets
Statement of Activities 2013
2012
Cash and Cash Equivalents
$492,819
$378,005
Contributions
Investments
2,302,247
2,369,770
Investment Income, Net
Contributions Receivable
564,929
940,328
Prepaid Expenses and Other Assets
252,546
211,876
Property and Equipment, Net
419,372
455,684
$4,031,913
$4,355,663
Total Assets
Liabilities and Net Assets
2013
2012
$2,163,307
$2,478,142
(40,856)
109,148
3,475
3,231
5,084,163
5,039,028
7,210,089
7,629,549
1,176,519
1,009,281
Research
505,152
2,247,311
939,090
649,960
Other Special Events, Net of Direct Expenses Program Income Total Public Support & Revenues
Program Services
Liabilities: Accrued Expenses
Public Support & Revenues
Public Education $615,545
$773,353
Payroll & Related liabilities
240,317
301,445
Professional Education
Funds Held on Behalf of Others
894,724
988,983
Patient Services
1,299,258
1,802,973
Awards and Grants Payable
337,939
609,814
Community Services
1,139,133
1,009,281
Loan Payable
784,280
791,423
5,059,152
6,718,806
2,872,805
3,465,018
555,997
570,995
1,326,477
828,083
Total Support Services
1,882,474
1,399,078
Total Cost of Program & Supporting Services
6,941,626
8,117,884
Change in Net Assets
268,463
(488,335)
Net Assets, beginning of year
890,645
1,378,980
$1,159,108
$890,645
Total Liabilities
Total Program Services
Supporting Services Net Assets Surplus/(Deficit) Unrestricted Temporarily Restricted Permanently Restricted Total Net Assets Total Liabilities and Net Assets
Management & General (1,296,940)
(2,063,978)
1,464,013
1,962,588
992,035
992,035
1,159,108
890,645
$4,031,913
$4,355,663
Fundraising
Net Assets, end of year
22 American Liver Foundation Annual Report 2013
ALF 2013 Supporters Prometheus Society ($100,000 and above)
Salix Pharmaceuticals, Inc. Merck, Sharpe and Dohme Corporation Genentech Inc. American Association for the Study of Liver Diseases (AASLD) Dr. Miriam and Sheldon G. Adelson Charitable Trust Federal Combined Health Campaign Vertex Pharmaceuticals Incorporated
Liver Ambassador ($50,000-$99,999)
Ameren Missouri Anonymous Donor Kadmon Pharmaceuticals, LLC Michael and Susan Kerr Thomas and Marjie Nealon University of Pittsburgh Medical Center Walgreens Specialty Pharmacy
Liver Leader
($25,000-$49,999) Anonymous Donor Banner Health Systems Estate of Colleen Veith Estate of John J. Robinson Estate of Victor H. Mohr Gilead Sciences, Inc. Hartford Hospital Idenix (Massachusetts) Inc. John J. McDonnell Margaret T. O’Brien Foundation Mayo Clinic of Arizona Novartis Pharmaceuticals Corporation United Way
Liver Advocate ($10,000-$24,999)
Abbvie Inc. Advanced Health Media Agro Group Int’l Holdings Ltd Anonymous Donor Arizona Transplant Associates, PC
Ballard Spahr LLP Boehringer Ingelheim USA Corporation Bristol-Myers Squibb Company Bryan Cave LLP Carlo P. and Kimberly Frappolli Cleveland Clinic Columbia University Community Health Charities of California Connecticut GI, PC Dalio Family Foundation, Inc. Denver Region Toyota Dealers Advertising Group Duane Morris LLP Estate of Rita Alexander FedEx Services Fox Family Foundation Gipson Family Foundation Greater Houston Community Foundation Gulfcoast LTC Partners, Inc. Herrick, Feinstein LLP Hyperion Therapeutics Irene Meyers Kohl’s Corporation KPMG, LLP Loma Linda University Medical Center Mesirow Financial Michael Braunstein Minnesota Gastroenterology, PA Naugatuck Valley Gastroenterology Consultants, LLC North Shore Gastroenterology and Endoscopy Center Phileona Foundation Premier Nut Distributors Inc. Robert W. Herring, Jr., MD Ryan Specialty Group, LLC Susan G. and Stuart D. Porter Talcott Franklin Texas Children’s Hospital The Dorothea L. Leonhardt Foundation, Inc. The Geo Group Foundation Inc. The Kellner Family Pediatric Liver Disease Foundation The Lee and Aidan McMahon Foundation Inc. The Tianaderrah Foundation University Hospitals – Ohio University of California - San Diego
Medical Center Walter C. Parkins Wells Fargo Bank, N.A. West Penn Allegheny Health System World Wide Technology Foundation
Liver Partner ($5,000-$9,999)
AcariaHealth Akin, Gump, Strauss, Hauer & Feld, LLP Ameriprise Financial Amy Nelson Anonymous Donor AT&T Avella Specialty Pharmacy Barona Band of Mission Indians Best Buy Co., Inc. Beth Israel Deaconess Medical Center Biesecker Foundation Bilzin Sumberg Baena Price & Axelrod LLP Biogen Idec Bobby Joe and Melany Bergeron Brian Bilzin Buchanan Ingersoll & Rooney PC Burman’s Specialty Pharmacy Callahan & Blaine, APC Cardinal Community Credit Union Caremark RX Inc Carolyn A. and Mark E. Hamlin Casino Arizona Talking Stick Resort Cedars-Sinai Medical Center Centene Management Company LLC Centerview Partners LLC CHC of Missouri Chicago Wolves Charities Christopher J. and Katherine A. Berman Community Foundation of NW Mississippi Community Health Charities of Texas Cooley LLP Cyril C. Llamoso Cytokinetics, Inc. David Graft David Reese Donald A. Kirshbaum and Patrice M. McCarthy Donor Network of Arizona Douglas A. Horst, MD and Maureen Phillips
American Liver Foundation Annual Report 2013 23
ALF 2013 Supporters Dr. and Mrs. Richard Averitte, Jr. Dynavax Technologies EMC Corporation First Citizens Bank Frank Karbe Frazier Family Foundation G. Steven Burrill Gabrielle Lajoie Gastroenterology Center of Connecticut, PC George A. Pavlov George and Kristyn Jamieson Greenberg Traurig Gregory T. and Linda Everson Harvey and Bella Kaufman International Business Machines Corporation Iris Maxton Jefferson University Hospitals John Goff, MD John Kaufman John Paul’s Automotive John Polio, MD Johnson & Johnson Jones Apparel Group, Inc. Joshua R. and Kristen Hanks Justin G. and Ann J. Bullion Kelly Fattman Kelly M. Wrenn Kluth Family Foundation Ladish Co. Foundation Latham & Watkins LLP Leonard A. Lauder Lisa M. Nyberg Lonnie M. and Cheryl D. Smith Marjorie W. Gilbert Mark Wasko Medical College of Wisconsin Methodist Center for Liver Disease & Transplantation Michael Flowers Michael Rivett Millennium Pharmaceuticals, Inc. Missouri Foundation For Health Morgan Stanley & Co., LLC Nancy Reau, MD Nemours Nestle Purina Petcare Company Nicole Ellis Foundation Norman Selby North American Shippers Association, Inc.
Old Lyme Gourmet Company Onyx Pharmaceuticals, Inc. Patricia L. and Kenneth C. Dawson Professional Firefighters of Hanover Quintiles, Inc. R. Laurence Macon Richard Runtz Rocky Mountain Gastroenterology Associates, PLLC Rush University Medical Center Samantha, Becky, Mark Foundation Samuel A. and Jill A. Hamacher Scripps Clinic Medical Group Silicon Valley Community Foundation Snell & Wilmer LLP Special Design Healthcare Spencer Glendon and Lisa Tung St. Luke’s Episcopal Health System Stamford Hospital Stifel Foundation Inc Sui Chanig Sang Bypass Trust Sutter West Bay Hospitals Tactical Advantage Group, LLC Tanner Services LLC The Bob O’Connor Foundation The CarMax Foundation The San Francisco Aids Foundation The University of Chicago Theravance, Inc. Theresa E. Taylor Thompson & Knight Foundation Tobira Therapeutics Toby Greim UAMC University of California San Francisco Medical Center University of California, Irvine University of Colorado Hospital Authority University of Pennsylvania UW Health VA Pittsburgh Healthcare System William A. and Sonya T. Carpenter Winfredo Fabi, DDS Winstead Civic Trust Yale-New Haven Hospital
24 American Liver Foundation Annual Report 2013
National Medical Advisory Committee Co-Chair Nancy Reau, MD Associate Professor of Medicine University of Chicago Hillel Tobias, MD, PhD Clinical Professor, Department of Gastroenterology NYU Langone Medical Center
Members Ghassan Abou-Alfa, MD Associate Professor, Gastrointestinal Oncology Service Memorial Sloan-Kettering Cancer Center Talal Adhami, MD Staff, Digestive Disease Institute, Department of Gastroenterology and Hepatology Cleveland Clinic Jasmohan Bajaj, MD Associate Professor, Internal Medicine Virginia Commonwealth University Medical College of Virginia School of Medicine Christopher Bowlus, MD Associate Professor, Department of Gastroenterology UC Davis Health System Douglas Dieterich, MD Professor of Medicine, Division of Liver Diseases Mount Sinai Hospital Joshua Friedman, MD Associate Professor of Pediatrics, Division of Gastroenterology, Hepatology, and Nutrition The Children’s Hospital of Philadelphia University of Pennsylvania John Goff, MD Clinical Professor of Medicine University of Colorado School of Medicine Robert W. Herring, MD The University of Tennessee – Methodist
F. Blaine Hollinger, MD Professor of Medicine, Molecular Virology & Epidemiology Director, Eugene B. Casey Hepatitis Research Center Baylor College of Medicine Kris Kowdley, MD Clinical Professor of Medicine University of Washington in Seattle Mauricio Lisker-Melman, MD Professor of Medicine Director, Hepatology Program Washington University School of Medicine Rohit Loomba, MD, MHSc Associate Professor of Clinical Medicine Associate Director of Clinical Research and Co-Director Translational Core Division of Gastroenterology University of California at San Diego Andrew J. Muir, MD Associate Professor of Medicine Clinical Director of Hepatology Duke University Medical Center John Polio, MD Connecticut Gastroenterology Associates, P.C. Adnan Said, MD Associate Professor, Gastroenterology and Hepatology University of Wisconsin School of Medicine and Public Health Rohit Satoskar, MD Assistant Professor of Surgery and Medicine Georgetown University Medical Center Transplant Institute Coleman Smith, MD Professor of Medicine Department of Gastroenterology, Hepatology and Nutrition University of Minnesota Medical Center Tamar Taddei, MD Associate Professor of Medicine, Section of Digestive Diseases Yale University School of Medicine Director, Liver Cancer Team Smilow Cancer Hospital Hugo E. Vargas, MD Chair, Division of Hepatology Mayo Clinic, Arizona
American Liver Foundation Annual Report 2013 25
Board of Directors OFFICERS Thomas F. Nealon III Chairman Daniel E. Weil Treasurer Carlo Frappolli Secretary
BOARD OF DIRECTORS Hamilton Baiden Mike Braunstein Nicholas J. DeRoma Allan J. Doerr Hilda Fuentes Michael Kerr Rohit Loomba, MD Nancy Reau, MD Susan Sherman Stone, CPA, MST, CFP Hillel Tobias, MD, PhD Thomas E. Starzl, MD (Honorary)
EXECUTIVE STAFF Lynn Gardiner Seim, MSN, RN Executive Vice President and Chief Operating Officer David Ticker Executive Vice President and Chief Financial Officer
Credits Writing: Stacey Harris Harris Health Communications Design: Enzo Fiorello
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Division Listing American Liver Foundation Across the Country
PACIFIC NORTHWEST
UPPER MIDWEST
NEW ENGLAND
TWIN CITIES
NEWTON
ROCKY MOUNTAIN
CONNECTICUT
MILWAUKEE
NORTHERN CALIFORNIA
NORTH HAVEN
CHICAGO
SAN FRANCISCO
GREAT LAKES
DENVER
MID-AMERICA
ST.LOUIS
CLEVELAND
GREATER NEW YORK NEW YORK CITY
INDIANAPOLIS
HEARTLAND
GREATER LOS ANGELES
MID-ATLANTIC WASHINGTON, D.C.
PHILADELPHIA
ALLEGHENY
NASHVILLE
LOS ANGELES MEMPHIS
PACIFIC COAST SAN DIEGO
DESERT SOUTHWEST
MID-SOUTH
PHOENIX
SOUTHEAST
HOUSTON
American Liver Foundation Annual Report 2013 27
39 Broadway, Suite 2700 New York, NY 10006 (212) 668-1000 National Helpline 1-800-GO-LIVER (1-800-465-4837) LiverFoundation.org HepC123.org HE123.org
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