Nealon Reflects on 2019 and Projects a Bright 2020
I’ve spent a part of January looking forward to 2020 and back at 2019. I recognize ALF is reaching more people, in more ways and more places. Our activities are broadly categorized as advocacy, patient support, advancing research, and education/awareness.
ALF’s advocacy takes place on all levels–community, state and federal—and we work with other advocacy organizations as well as undertaking our own efforts. Our National and Division staff and leadership are all active, and we also help liver patients to speak out effectively about their experiences, or on behalf of others affected by liver disease, through our National Patient Advisory Committee (NPAC). In August, we trained a new NPAC cohort, for Hepatorenal Syndrome patients and caregivers.
We support patients, caregivers, family members and others affected by liver disease, directly through the chat feature on our website, phone calls, emails and postal mail. Each year, we directly communicate with about 10,000 people who reach out through these mediums for Support Services. A Facebook Group for Non-alcoholic Steatohepatitis patients, numerous support groups, such as the one for Primary Biliary Cholangitis (PBC), specialized events for transplant, and other forums, incorporate liver patients who allow us to meet very specific support needs.
Research into understanding and curing liver disease is vital to continued progress toward a world without liver disease—our vision and our goal. ALF provides research fellowships each year to the most promising early career researchers in the field. We look forward to seeing their investigations someday lead to cures.
An even greater direct impact is in education. Our local and regional Community Education and Ask the Experts programs bring experts in the field face-to-face with well over 10,000 people each year. Every Division offers programs, a growing number in languages other than English. Webinars allow us to reach out to specific audiences on a national level, bringing medical professionals, patients, caregivers and others the information they need on numerous liver diseases as well as broader topics like transplantation, clinical trials and financial planning. Links from ALF’s website allow for viewing a library of past webinars. Videos, printed materials and website information also allow ALF to share information on an even greater scale.
But ALF’s greatest success is in raising awareness about liver disease. Once widely misunderstood and often stigmatized, major public awareness campaigns about liver cancer, hepatitis, PBC and other liver diseases have brought these conditions out of the shadows and into public consciousness. Liver Life Walks, social media campaigns and even transit ads have put accurate information front and center.
Although 2019 is now behind us, we look forward with renewed energy to a bright 2020.
President & CEO
American Liver Foundation
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