AMERICAN LIVER FOUNDATION
39 BROADWAY SUITE 2700, NEW YORK, NY 10006 www.liverfoundation.org

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Organizations Filed Purposes: OUR MISSION IS TO FACILITATE, ADVOCATE, AND PROMOTE EDUCATION, SUPPORT SERVICES, AND RESEARCH FOR THE PREVENTION, TREATMENT, AND CURE OF LIVER DISEASE.

PUBLIC AND PATIENT EDUCATION: Information specialists are available to answer questions about liver disease and liver wellness, including risk factors, prevention, symptoms, early detection, diagnosis, and treatment options. ALF can direct callers to local services in their area, help them learn about clinical trials, and help them find a physician. Interpretation services are available for non-English speakers. We also host a vibrant online community across numerous social media platforms and one website. The Liver Lowdown e-newsletter is disseminated to provide information about the prevention, treatment, and cure of liver disease and about the Foundations educational and signature programs; an in-depth focus on specific types of liver disease, and profiles of liver patients and caregivers personal experiences. In 2019, nearly 120,000 people received each of our issues. In CY 2019, our HelpLine answered over 9,500 requests for information via phone, e-chat, email, and "snail mail". The American Liver Foundations digital content allows us to reach millions of people with our information and resource. The ALF website helps us better deliver quality programs and events to our constituents including multimedia webinars, videos, and broadcasts. We've seen a steady rise in use with approximately 5 million page views in 2019 from 3.5 million in 2018 and 1.9 in 2017. At the end of this year, we had 159,920 Facebook fans and 6,693 Twitter followers. Our support community on the Inspire platform had over 26,000 members, an increase from 19,000 in 2018. We released two Public Service Announcements (PSA) in 2019. Chicago Bears Safety Deon Bush spoke about the importance of being screened for Liver Cancer and Charles Esten of the hit show Nashville educated viewers about Living Donor Liver Transplantation. Combined, these PSAs reached 25,000 people. We created a 4-minute alcohol-related liver disease education video which explains the effects of alcohol consumption on the liver. This is available on our YouTube page and has received over 9,000 views: https://www.youtube.com/watch?v=xaTYclP8F8Q&t=1s In 2019, we created NAFLD/NASH education videos and shared NAFLD/NASH patient and caregivers stories. These videos received nearly 10,000 views. In CY 2019, we continued our series of patient education webinars. Webinars sponsored by our Divisions include features on elimination of hepatitis c, alcohol related hepatitis, auto-immune hepatitis, pediatric liver disease, nutrition and the liver, prevention of fatty liver disease, mental health, and liver transplantation. On the National Level, we hosted both patient and professional education webinars on Clinical Trials, Cirrhosis, NAFLD/NASH, pediatric liver diseases, Wilson Disease, navigating financial issues for patients, and a Liver Cancer Webinar in Spanish. Additionally, we collaborated with the CDC on two webinars on Hepatitis A and the Opioid Epidemic. These and other videos on our You Tube channel were viewed more than 270,000 times. ALF expanded its educational resource library by creating updated and new resources on viral hepatitis, liver transplant, and nonalcoholic fatty liver disease including four new at-a-glance educational materials on Hepatitis C -Interpreting your Test Results, Hepatitis C in Children, Pregnancy and Hepatitis C, and Hepatitis C and Young People. (Many of these resources are available in English, Chinese, Korean, Vietnamese, Russian and Spanish). All brochures are available for download from our website at https://liverfoundation.org/for-patients/resources/brochures/ ALFs National Patient Advisory Committee, made up of patient advocates from across the country with hepatitis C, NAFLD, primary biliary cholangitis, Hepatic Encephalopathy, and alcohol-related liver disease, was expanded to include patients with Hepatorenal Syndrome. Our patient education and support program for Primary Biliary Cholangitis (PBC) continued with Mind Body Workshops, which were facilitated by the PBC Foundations Head of Education and Development, Robert Mitchell-Thain. We held two workshops in New York City and Cleveland. Additionally, we held two train the trainer sessions in each city so our PBC NPAC members and program staff could be trained on holding these workshops. Four additional workshops were held by our newly trained facilitators in St. Louis, Boston, New York and Cincinnati. These mind-body workshops focus on the interaction between a persons brain, body, and behavior which have been practiced for centuries to alleviate physical dysfunction. The NASH Facebook Support Group, a support community for those affected by Nonalcoholic Steatohepatitis (NASH) has grown significantly since its inception in 2018. The group has 1,196 members from 522 members in 2018. This group is open to anyone connected to NASH around the country and serves as a space to feel less alone and seek answers to questions they may have about their journey. Our Ask the Experts educational program offered participants across the United States access to hear from medical professionals on a variety of topics, including viral hepatitis, non-alcoholic fatty liver disease, alcohol-related liver disease, liver cancer, nutrition, managing your medications, and liver wellness. Nearly 1,000 people participated in these programs.

PATIENT SUPPORT: ALFs Viral Hepatitis community education program provides comprehensive and accurate information about hepatitis (A, B, and C), including risk factors, transmission and prevention, and an overview of treatment options. In CY 2019, ALF reached 4,097 people through this important program.

COMMUNITY SERVICES: ALF offers several Community Education Programs on liver health and liver disease that are interactive and age appropriate. These popular programs include: Love Your Liver, Liver Wellness - What Everybody Needs to Know, Teens to Twenties - Liver Wellness Guide, Non-Alcoholic Fatty Liver Disease, and Alcohol-Related Liver Disease. In addition, ALF participates in community health fairs and coalition meetings to raise awareness of liver disease. In CY 2019, Community Education Programs reached a combined total of 7,629 people nationwide, and health fairs/outreach reached 6,281 people. ALF participates in federal, state, and local advocacy efforts to address the needs of people affected by liver disease and that focus on larger healthcare issues to improve liver health and increase research funding. In CY 2019, ALF has been included in community sign-on letters advocating for patients with chronic diseases on issues including access to care and research; participated in coalitions with various other patient advocacy groups to urge increased funding for the NIH, CDC, VA, and DOD; distributed "calls to actions" for our community to contact their elected officials regarding a variety of issues relating to liver disease through our Advocacy Platform, which currently includes 850 constituents; hosted an education and advocacy day in Washington, DC that included 57 patient advocates representing multiple disease states; and brought patient advocates to Liver Hill Day with the American Association for the Study of Liver Disease and the Digestive Diseases National Coalition. During The American Liver Foundations Advocacy Day, we held a Congressional Briefing Luncheon at which Dr. Jono Mermin, the Director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the CDC spoke about spike in infectious diseases attributed to the opioid epidemic and National Patient Advisory Committee Member Sherry Tierney spoke about her patient journey with hepatitis C and receiving a liver transplant. Additionally, we presented ALFs 2019 Distinguished Service Awards to Senator Kevin Cramer (R-ND), Sponsor of the Access to Marketplace Insurance Act; Senator Kirsten Gillibrand (D-NY), Sponsor of the Living Donor Protection Act; Congressman Jerry Nadler (D-NY), Sponsor of the Living Donor Protection Act and Congresswoman Nydia Velazquez (D-NY), Sponsor of the LIVER Act.

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