American Liver Foundation
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Dear Friends and Supporters of ALF:
As National Board Chair of the American Liver Foundation, I am excited to be writing to you as part of the first edition of our newsletter. There is so much exciting and positive news to report regarding the American Liver Foundation and we wanted you to know all about it. It is our plan to “publish” this newsletter regularly to communicate interesting and exciting developments in the ALF world. At the same time, our newsletter will enable us to stay in touch with all of you – our most important constituency because you are the ones most responsible for helping us advance the vital mission of the American Liver Foundation to serve and support liver patients and their families through research, advocacy and education. We hope that you will read this edition of the newsletter and be on the lookout for future editions. Any and all comments or suggestions that you may have would be greatly appreciated.
As I travel around the country on behalf of ALF, the most heart-warming and exhilarating part of that experience is the opportunity to meet all of you who are on the front lines of the battle to conquer liver disease. The work that many of you are doing is essential to the success of ALF and is so important to the many, many liver patients and their families who depend on us. Thank you for all you do.
In closing, I want to thank you all for your interest and support. I also want you to know that you have our pledge that we will not rest until we have found the cause and a cure for liver disease in all its forms.
National Board Chair
What You Need to Know About the “Hep C 123 Program”
Hepatitis C can be called “the stealth disease” because even though you may feel perfectly well, it can creep up on you.
Maybe you’ve been feeling tired, you have muscles that ache, a sore stomach, and you’re not as hungry as you were in the past.
No big deal?
Actually, it could be, because most people who develop chronic Hepatitis C show no overt symptoms. The staggering fact is that, for instance, unless you develop jaundice—a yellow discoloration of the skin and whites of the eye—you could unknowingly be walking around with Hepatitis C for 15 years or longer before being diagnosed.
So, what can you do when suddenly diagnosed with Hepatitis C? How can you overcome the shock of having liver disease? What do you do to cope and move forward with your life?
In other words, what’s next?
Managing Hepatitis C
The comforting news is that people with Hepatitis C can manage the disease and lead full, active lives.
And the American Liver Foundation, with its vast resources, research capabilities and compassion, is here to support you and your family from the moment the frightening words “You’ve got Hepatitis C” are uttered.
To help those with Hepatitis C, the American Liver Foundation has introduced Hep C 123. This is a comprehensive program that makes your journey through the illness more manageable simply by following three clearly defined steps,thanks to generous funding from Merck. See the Resource Guide below.
Incidentally, the “123” educational concept is also available for patients diagnosed with other forms of liver disease, including Encephalopathy/Cirrhosis, Non Alcoholic Fatty Liver Disease and Liver Cancer.
Here, in brief, are the three steps or components of the Hep C 123 Program:
So what’s the bottom line?
The key take-away for you or someone you love is grasping the importance of being tested for Hepatitis C, and preventing it in the first place.
Still, if you’re diagnosed, be reassured that the American Liver Foundation’s Hep C 123 Program will provide you and your family with in-depth education and support. The more fully informed you are, the better positioned you’re likely to be when having to confront Hepatitis C.
Hopefully, in time, by following the regimen of the Hepatitis C 123 initiative, you’ll be able to say: “Yes, I used to have Hepatitis C—but now it’s behind me.”
HEP C 123 Resource Guide
Remembering Jessica Reynolds: A Devoted American Liver Foundation Advocate
It is with a deep sense of sadness that the American Liver Foundation announces the passing of Jessica Reynolds, one of our most dedicated advocates.
After courageously battling Autoimmune Hepatitis for 17 years, Jessica—popularly known as Jess— passed away on May 15. She was 27.
We offer our condolences to Jess’s loving family, including her parents, Jim and Holly (Hautman); siblings, Tyler, Nick and Jamie; and fraternal grandparents, Skip Reynolds, Mary and Bill Bissonett.
What made Jess such a one-of-a-kind human being? Where to begin?
The short story is that despite her chronic liver disease, Jess did her best to muster the strength and enthusiasm to volunteer for the American Liver Foundation in Minnesota. She also held down a day-time job at a hair salon.
Jess accomplished all that, while suffering several debilitating health setbacks and, at various times in her short life, undergoing a series of liver transplants.
The more granular story is that Jess was diagnosed with Autoimmune Hepatitis when she was 10. Autoimmune Hepatitis is a disease in which the body’s own immune system attacks the liver and causes it to become inflamed. The disease lasts many years. As Jess and her family knew only too well, if untreated, it can lead to cirrhosis and liver failure. In this regard, Jess unfailingly expressed gratitude for the ongoing research projects conducted by the American Liver Foundation.
Starting at the age of 15, Jess had four liver transplants. For her second transplant, her mother donated part of her liver. Whenever she could, Jess showed how grateful she was for receiving these life-saving surgeries at the University of Minnesota Medical Center by making sure people knew about the need for organ donors. (Of the more than 118,000 people waiting for organ transplants in the U.S., nearly 16,000 need livers.)
Jess, in the midst of all the turmoil surrounding her health, graduated from the University of Minnesota in 2009. That’s the spirit of determination, the sheer will to set and attain goals that were to define her entire life.
In addition to volunteering for the American Liver Foundation, Jess—who lived in Apple Valley, a small city in Minnesota—found the time for the past five years to work at Coles Salon in Eagan in the Twin Cities.
Dee Girard, executive director of the American Liver Foundation’s Great Lakes Division (Minnesota and Wisconsin), had the pleasure of working closely with Jess. In a memo to staff after Jess’s passing, she wrote: “Jess endured so much but her spirit for our cause never wavered.”
Elaborating on this during an interview, Ms. Girard, who works out of the Foundation’s Milwaukee office, said, “Jess was always there for us in the Minnesota area. We really depend on our volunteer leadership—people like Jess—to move our mission forward. She was always proactive and a dynamo. Her energy was contagious.”
Ms. Girard said that Jess didn’t want the attention for herself; she wanted it to be for the cause. She served as an American Liver Foundation board member for four years and participated on various committees, making invaluable contributions to fundraisers including our Flavors dinner and our walks. In fact, she didn’t simply help with the planning Jess remained as active as possible, impressively completing 14 walks.
Referring to how Jess took part in the walks, Ms. Girard recalled how, last August, this amazingly courageous woman had her fourth liver transplant.
“In September, Jess walked!” Ms. Girard said. “She knew that she was blessed, and every day her actions demonstrated how thankful she was to be alive.”
A Fundraiser to Honor Jess
It’s strange how things sometimes work out, or don’t.
Friends and colleagues of Jess, including some of her salon clients, had scheduled a fundraiser event for Sunday, May 19—what they called a “Jess Fun Day.” The goal was to assist Jess and her parents offset some of her medical bills by putting up auction items and offering raffles with prize drawings.
Even though, so unexpectedly, Jess’s life had ended just four days earlier, the organizers decided not to cancel the event. Instead, the fundraiser would go ahead as planned, except now it would be to remember and honor Jess—the best way they could think of to celebrate this remarkable woman’s life.
“They came out for Jess and her causes, and I have never seen anything like it,” Ms. Girard said.
“Her colleagues from Coles all wore pink t-shirts because Jess loved that color. There was a video playing, showing different chapters of her life. And because Jess was really into boy bands, which made people laugh, they added in some boy band music during the event.”
There were tears, a lot of tears, Ms. Girard recalled.
“But everyone wanted to do this for Jess and her family, and they tried to be as upbeat as possible. They knew Jess would have wanted them to be uplifted because she said she was blessed every day that she had a chance to live for as long as she did. It was a way for keeping Jess alive in all of us.”
Ms. Girard said that because Jess was so passionate, her colleagues at the salon are now fervently committed to taking up the cause for her. For one thing, they will take part in the American Liver Foundation’s Liver Life Walk in the Twin Cities. They want to do this in memory of Jess.
Fittingly, the entire Twin Cities Walk in September will honor Jess. Ms. Girard, who is planning the event, said, “Everyone at the walk will receive a button that will carry one of Jess’s favorite quotes: A smooth sea never made a skillful sailor.”
Our Signature Campaigns and Core Programs
Did you know that there are more than 100 different types of liver disease, and that there are approximately 30 million liver patients in the U.S.?
In our fight against liver disease, and to fulfill our vision that all Americans can have a healthy liver, the components of the American Liver Foundation’s educational and fundraising efforts center around three signature campaigns, Liver Life Walk, Flavors and Liver Life Challenge. These campaigns are supplemented by a host of core educational programs.
To get to know us better, here’s a quick overview of our signature campaigns and programs. Whether you’re learning about them for the first time or this is a “refresher,” we hope you’ll find the information useful!
Liver Life Walk Leads the Way in the Fight against Liver Disease
The Liver Life Walk is the American Liver Foundation’s largest national signature campaign. It’s our major fundraising and awareness event related to liver health in the United States, and every year, it inspires 25 local communities to make our mission a reality.
Liver Life Walk events unite liver patients and their families and friends, the medical community, corporations and the broader community in our cause. Last year, approximately 25,000 walkers and 2,000 teams participated, and we’re definitely looking to outdo that this year!
The Liver Life Walk keeps the mission of the American Liver Foundation “moving forward,” both literally and figuratively. Money raised by Liver Life Walk participants provides critical funding for medical research, public education, patient support services, and advocacy.
LEARN MORE at liverfoundation.org/walk.
FIND A WALK: As the Liver Life Walks take place from April through September, there may still be time for you to register for this year’s walk in your region! Find a walk…
No Ordinary Gala—Great Chefs, Great Food and a Great Cause
Food, glorious food, and all for a great cause!
Flavors began in 1991 when James Beard Award-winning chef Christopher Gross in Phoenix and other area chefs wanted to support the mission of the American Liver Foundation.
Ever since then, the American Liver Foundation has hosted annual Flavors events. We take pride in the fact that Flavors goes beyond the traditional gala. Rather, as we say, it’s “A Culinary Experience.”
Famous for its food, wine and gourmet dining, Flavors takes place in 21 cities throughout the nation. Our culinary masters include local celebrity chefs, James Beard Award winners, and a past winner of Bravo’s Top Chef. The typical Flavors evening includes a cocktail reception, a live and/or silent auction to raise funds for the American Liver Foundation’s mission, and a local chef preparing a multi-course dinner at each table.
Recognizing our supporters is important to us. So many Flavors events also honor physicians, corporations, philanthropists or volunteers who have made significant contributions to the local liver disease community.
LEARN MORE at liverfoundation.org/flavors.
PURCHASE TICKETS: Some regions have already hosted their Flavors event this year. But others are scheduled for September. Find out more…
A Chance to Live in the Moment
The Liver Life Challenge is an endurance training and fundraising program that allows individuals to achieve personal fitness goals and to participate in some of the most desirable sporting events in America.
Team members raise funds for the American Liver Foundation to earn the privilege of competing in some of the country’s most prestigious marathons, road races, climbs and other athletic events. Some of these prestigious events include the Boston Marathon and the Mount Shasta Climb, which is the second highest volcano in the continental U.S.!
Participants receive an array of benefits such as expert endurance training; regular group trainings and team meetings, and travel and accommodations.
LEARN MORE at liverfoundation.org/challenge.
WANT TO PARTICIPATE? It’s not too late to find a challenge this year! Learn more…
Reaching Out to Multiple Audiences, Including School-Aged Students Who Are Taught to “Love Your Liver”
The American Liver Foundation education programs target three populations — the general public, patients with liver disease and their families, and healthcare or social service professionals.
Our education program offerings consist of three core programs, executed consistently in local communities throughout the country, in addition to national and regional-specific programs.
The core programs include:
Love Your Liver (LYL)
This is an interactive education program targeted to school-aged students. We offer four distinct age-appropriate programs to educate students about the liver, its functions, how to care for it, types of liver disease, risk factors and prevention steps. On average, we reach nearly 40,000 students with Love Your Liver each year. Find out more…
Treatment Choices Initiative (TCI)
Hepatitis C infects approximately 4.1 million Americans and is the leading cause for liver transplants. The Treatment Choices Initiative educates participants about the liver, liver disease, specifically Hepatitis C, treatment options and other disease management strategies. The program provides perspectives from a healthcare professional and the personal experience of a patient with Hepatitis C. Find out more…
Fatty Liver Program (FLIP)
The Fatty Liver Information Program is a wellness and prevention program offered nationwide and targeted to the general public, as well as to liver disease patients. This 45-minute program educates participants about the liver, its functions, and strategies to maximize liver health. FLIP focuses specifically on non-alcoholic fatty liver disease (NAFLD) which affects up to 25% of Americans and 6 million children. FLIP is conducted in various community-based settings. Find out more…
The Liver Matters Education Program, primarily designed for corporations, integrates key strategies to keep one's liver healthy. The program can be scheduled throughout the year as either a stand-alone program, lunch and learn, or as a part of your corporate wellness series. The Program is designed to be a 60 minutes presentation but can be customized to fit the time your organization has to offer. Find out more…
1. As incredible as it may seem in pure numbers,Non-alcoholic Fatty Liver Disease (NAFLD) affects up to 25% of people in the United States.
2. NAFLD is the build-up of extra fat in liver cells that isn’t caused by alcohol. It’s normal for the liver to contain some fat. However, if more than 5 to 10% of the liver’s weight is fat, then it’s called a fatty liver (steatosis).
3. Who is likely to have NAFLD? It tends to develop in people who are overweight or obese, or have diabetes, high cholesterol or high triglycerides. Rapid weight loss and poor eating habits also may lead to NAFLD. But some people develop NAFLD even if they don’t have any risk factors.
4. Serious risks are linked to NAFLD. It may cause the liver to swell (steatohepatitis).Over time, a swollen liver may cause scarring (cirrhosis)—and may even lead to liver cancer or liver failure.
5. Strangely, NAFLD often has no symptoms. But when symptoms do occur, they may include fatigue, weakness, weight loss, loss of appetite, nausea, abdominal pain, spider-like blood vessels, yellowing of the skin and eyes (jaundice), itching, fluid build-up and swelling of the legs (edema) and abdomen (ascites), and mental confusion.
6. If there are no obvious symptoms, or if the symptoms may be due to any number of illnesses, how is NAFLD diagnosed? NAFLD is initially suspected if blood tests show high levels of liver enzymes. But, to be sure, other liver diseases are first ruled out through additional tests. Often, an ultrasound is used to confirm the NAFLD diagnosis.
7. How many kinds of treatments are there for NAFLD? How about none? In reality, that there are no medical treatments yet for NAFLD.
8. So if there are no known medical ways to cure NAFLD, can it be treated and, better yet, prevented? Yes, the good news is there are steps you can take to improve the health of your liver!
9. The more severe form of NAFLD is called non-alcoholic steatohepatitis (NASH). Most people with NASH are between the ages of 40 and 60. It’s more common in women than in men. Like NAFLD, NASH often has no symptoms and people can have it for years before symptoms occur. NASH is one of the leading causes of cirrhosis in adults in the United States. Up to 25% of adults with NASH may have cirrhosis.
MORE INFORMATION IF YOU HAVE NAFLD OR NASH: Learning that you have nonalcoholic fatty liver disease, you’ll have a lot of questions. The American Liver Foundation is here to help with this
Monday, April 15, 2013 was planned to be a very special day for members of the American Liver Foundation’s New England-based Run for Research Team. It was special for them and the thousands of other people who descended on Boston for the 117th Boston Marathon.
It was particularly noteworthy for the American Liver Foundation, as the New England Chapter celebrates its 25th Anniversary of the Run for Research Program this year.
An entire year planned with milestone events and memories that would last a lifetime. The perfect marriage of an organization whose mission is to eradicate a disease that has over 30 million faces and a team filled with the very best human beings you would ever have the pleasure of meeting.
Some have a connection to the mission…some do not…but all have the very best of intentions, good hearts, and they are all a part of our extended family.
This family has been forever changed; the kind of change that blindsides you at 2:50 pm on a supposedly carefree Monday afternoon. This kind of change leaves scars, and it reminds us of how very sacred and fragile this life can be.
Accounting for Every Runner
It took our New England team nearly 48 hours to account for every single runner and their respective family members. Then, on that final call, on late Wednesday afternoon, we were able to feel relief for our entire team that they were physically safe and sound, as well as their family members.
Hundreds of conversations, thousands of words spoken, endless tears shed….emotions still too raw to fully explain. How can we feel complete happiness when there was such loss and destruction?
The great City of Boston is forever changed. Families are forever burdened. Innocent lives were lost. An 8-year-old child was killed. Children…sweet children…all the mile markers along the route were dedicated to the victims of Newtown. Parents were running in memory, and that was taken away from them.
So very much was lost that day, but Bostonians started picking up the pieces just moments after the tragedy. The Boston police and law enforcement from districts throughout the state, the numerous fire departments, ambulatory services, and the general public worked together in extraordinary measures that will never be forgotten.
Runners helped each other to safety, some nearby the finish line ran to the scene to help lift debris and to help save lives ….and some ran another mile to give blood without a second thought. It wasn’t just Bostonians though, it was a world-wide running community that united and persevered.
In the Face of Tragedy, Hope Sustains Us
“Boston Strong” is now the mantra of a city that is repairing what is broken, healing what is wounded, and springing hope into the souls of all affected.
Hope is a curious thing. It is the reason we are all able to wake up the next day and breathe after a horrific tragedy. Hope can pacify our sorrow, give us strength when we are weak, and it is what sustains us as a human race.
In this spirit of hope, which brings out the best in humanity, we would like to send our most sincere appreciation to members of our Run for Research Team. Whether you ran this year for the American Liver Foundation or in the past, you make the world a better place.
We are forever grateful for your support, dedication and heart. Thank you.
“Think Again” Campaign Dismantles the Stigma
An unfortunate aspect that comes with somebody being diagnosed with liver disease is that it’s often unfairly associated with poor lifestyle choices. There’s also a perception that it affects older people.
In an effort to break the stigma and to enable people to better understand the facts about liver disease, the New England Division of the American Liver Foundation recently launched an awareness campaign called “Think Again.”
The campaign’s messaging tackles stereotypes with copy that reads: Think you know the face of liver disease? Think again.
A subsidiary theme is: Face the stigma. Learn the facts.
Many Patients Lead Healthy Lives
“The message of the campaign is that stereotypes about patients with liver disease should be countered by the truth,” said Samantha Masterson, the executive director of the American Liver Foundation’s New England Division.
“The fact is,” Ms. Masterson, said, “liver disease is estimated to affect 30 million people or 1 in 10U.S residents, many of whom lead healthy, active lives. A shocking 70% of those living with liver disease are completely unaware of their illness. So when you look into the faces of people, you usually can’t identify who has liver disease of some sort.”
In terms of media placement, the campaign is supported by an outdoor billboard in Boston, Public Service Announcements (PSAs) throughout New England, and a dedicated web page at thefaceofliverdisease.org.
Following the success of “Think Again” in New England, the plan is to roll it out nationally.
Humanizing the Faces of Liver Disease
The advertising visual depicts three “faces” that highlight the unique stories behind liver disease:
© Copyright 2017 American Liver Foundation. All Rights Reserved. The American Liver Foundation is included in CharityWatch’s 2016 list of Top-Rated Charities and is a Member of the World Hepatitis Alliance.