Alumni Newsletter September 2011

A NEWSLETTER OF THE AMERICAN LIVER FOUNDATION®

SEPTEMBER 2011

New leadership installed at the American Liver Foundation The American Liver Foundation announced the selection of Donna Cryer as Chair of the Foundation Board of Directors. Mrs. Cryer is a liver transplant survivor and one of two patients to head the organization.

Mrs. Cryer has a long history of distinguished service in the liver community beginning with her 1994 liver transplant made necessary from primary schlerosing cholangitis. In addition to being an American Liver Foundation board member, she served as a patient affairs specialist at United Network for Organ Sharing from 1996 to 2000 and served on the membership and professional standards committee from 2002 to 2005. Mrs. Cryer’s passionate patient advocacy includes her current service of five-year term as a patient representative to the U.S. Food and Drug Administration. She served on the agency’s Gastrointestinal Advisory Committee in 2010. Mrs. Cryer is chief executive officer of CryerHealth, a healthcare consultancy based in Washington, D.C.

Newton Guerin was recently n a m e d President and Chief E x e c u ti v e officer of the American Liver Foundation (ALF) as announced by Donna Cryer, Chair, ALF Board of Directors. Guerin's appointment is effective immediately.

Guerin has served as the American Liver Foundation’s Chief Operating Officer since late 2007 and has been instrumental in unifying the Foundation's nationwide operations and brand e n h an c e m e n t including creating an organizationalwide grassroots governance structure. He led the strategic planning process which resulted in more focus on local delivery of programs to benefit people with liver disease. In addition, Mr. Guerin oversaw the initiation of The Journey Worth Making, a special gifts initiative to increase funding for the Foundation’s mission programs.

In accepting the position, Mr. Guerin said, "I am honored to be the next President and CEO of the American Liver Foundation and look forward to expanding our fo cu s on live r we llne ss and sup portin g million s of American s living wit h live r d isease . We carry out our mission through a network of volunteers and staff in Divisions throughout the country. Through their creativity and hard work, these individuals provide education for liver health and prevention of liver disease that will ultimately save lives. It is a special privilege to be part of their efforts”.

For more information visit our website at www.liverfoundation.org

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Lynn Gardiner Seim, MSN, RN named as new Vice President, Programs We are delighted to introduce Lynn Gardiner Seim, MSN, RN as the newly hired Vice President, Programs for the American Liver Foundation. Ms. Seim brings a wealth of talent and experience to her new role. She holds a master’s degree in nursing with significant clinical and administrative experience, particularly in the care of children and their families.

As Sr. Vice President, National Program at The Children’s Health Fund, Ms. Seim expanded The Fund’s National Network from nine to twenty-two primary care programs serving medically underserved children and families in urban and rural settings in some our nation’s most disadvantaged communities. In 2005, she played a key role in the Fund’s response to Hurricane Katrina by leading three medical teams to devastated areas along the Gulf Coast immediately after the storm. Her leadership ensured the teams’ consistent presence throughout the remainder of 2005, bringing medical care to thousands who would have otherwise had no access to healthcare. Ms. Seim then worked to establish three permanent primary care programs along the Mississippi Gulf Coast, and in Baton Rouge and New Orleans, Louisiana.

Most recently, Ms. Seim was Vice President, Business Development and Community Programs at St. Mary’s HealthCare System for Children in New York. She has served as President of the International Mobile Health Association, has been published on the topics of home care for children and disaster relief, and is a frequent national speaker.

Ms. Seim’s focus will include ensuring program excellence and enhancing implementation of core programs, support services, research and advocacy. Her proven track record in business development and program management gives her a unique perspective as she assumes responsibility for leading ALF mission delivery.

New Support Guides For 2011 New Support guides for individuals and families affected by liver disease are available online at www.liverfoundation.org

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3rd Quarter Program Review

In the 3rd Quarter FY 2011, the American Liver Foundation (ALF) reached 31,185 individuals through education programs, support services, and outreach activities. ALF conducted 207 education programs for 10,331 individuals. Additionally, ALF provided needed support services to 1,930 individuals through HelpLine requests and 209 individuals through support groups. Through its outreach activities, ALF reached 18,715 individuals.

Run the Walt Disney World Marathon with the American Liver Foundation It’s More Than A Race ... it’s a journey of moments that will challenge, inspire and change you!

The American Liver Foundation’s Liver Life Challenge® offers a ticket to America’s most desirable endurance events like the Walt Disney World® Marathon.

Our endurance training and fundraising program will lead you across the finish line with coaching, training and tools for success.

From the moment you meet your coach and teammates to the moment you cross the finish line, the Liver Life Challenge provides an unforgettable experience. You’ll achieve your fitness goals and help those with liver disease – so they can create moments of their own.

Join a team a Liver Life Challenge Team in Connecticut, Philadelphia, Cleveland, Denver or participate virtually with our highly skilled coaches. To learn more visit http://liverfoundation.org/DisneyMarathon

In Memory of ED BLAKE On January 20, 2011, the American Liver Foundation lost one of its strongest advocates and supporters.

Ed Blake joined the National Board of Directors in 1991 and served as Treasurer for several years. He was named a lifetime honorary board member in 2000 in recognition of his significant contributions to the Foundation.

Ed was a native of the Boston area, but achieved success in New York as an investment manager and economist. Ed was a Chartered Financial Analyst and sat on the board of examiners. He was a principal in the firm of Pinnacle Associates.

Ed never stopped being active. He was a member of the ALF investment committee from 2005 until the time of his death. He knew the true meaning of time, talent and treasure and gave freely of each. Ed was one of ALF’s strongest advocates and a wonderful friend. We will miss him dearly.

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Where Are They Now? Winn Stephenson, Surviving and Thriving in Memphis

by Todd Lyon

Science has served Winn Stephenson well. As Senior Vice President of Technology Systems at Fedex, he helped pilot the company through an unprecedented period of growth fueled by innovation. Indeed, when he joined the Memphis-based Federal Express in 1979, operations were dependent on main-frame computers to help shepherd packages across the country and around the world; by the time he retired in 2004, Winn’s IT team had developed hand-held remote terminals that could process millions of transactions a day -- and left competitors scrambling to keep up.

“I’ve been very fortunate,” says the jovial Winn, but it’s not just his mighty career that he’s thankful for: In December of 2010, after years of health problems that progressively sapped his strength, the 67-year-old received the gift of a liver.

It happened so fast he can still hardly believe it, and yet Winn’s liver saga dates back to 1985, when he first became jaundiced and learned that he had a viral infection classified, back then, as non-A-B hepatitis. The condition went into remission on its own, and he returned to what he calls a “quasi-normal life.” Fifteen years later, at the University of Tennessee Health Science Center, including Dr. Jaquelyn Fleckenstein, whom he calls “a giant among giants,” was able to diagnose Winn with auto-immune hepatitis. She started him on a drug regimen that included the steroid Prednisone, which kept his numbers at “high normal.”

In 2000, still working full-time, Winn was well enough to follow Dr. Caroline Riely’s urgings and restart the dormant Mid-South Chapter of the American Liver Foundation. “They said, ‘Winn, you’re president.’ I had lots of connections and resources and it was easy to get people to help. ”The Chapter held its first gala four months later, which was attended by 600 people. Many volunteers worked their butts off,” Winn proudly remembers.

It wasn’t long before Winn was recruited for the National Board. He stayed on and loyally served until 2005, when the travel demands became too much for him; as for the Mid-South Chapter, he gave up his presidency in 2009, but is still a member of the board. “I’m always the guy with the big mouth,” he assures.

In early 2010, Winn’s numbers started rising. “They inserted a liver stint, that helped,” he says. “But I was looking pretty raggedy.” For the first time, he and Dr. Fleckenstein discussed the possibility of a transplant. She submitted his name in late November; on December 15th, after his screening had been completed, she went in front of a medical committee to present his case. The following Monday he was put on the transplant list. On Wednesday, December 22nd, he got a call: Could he be at the hospital in one hour? “Sounds good to me,” he answered.

He woke up on December 23rd and complained: ‘When are they going to do this thing?” Then he realized he had 53 staples across his stomach. “I said, ‘You’ve got to be kidding!’ Then I cried like a baby.” The new liver was “rocking and rolling right off the bat,” he reports, “but I was a blob for a month.” After six months he started feeling like his old self, with a few changes: The pre-diabetes he’d had before the surgery advanced enough that he’s become insulin dependent, to the extent that he “dreams of powdered doughnuts.” and he struggles to stay at 145 pounds (pre-surgery, he was a healthy 200-pounder). “I look like Ichabod Crane,” he says with a wry chuckle.

“Not ugly, but really skinny.”

Perhaps the most significant change that Winn has experienced is emotional. “I went in there tough, and now I’m a much softer person,” he confesses, with a catch in his throat. “People would send me e-mails and cards that would tear me up. I appreciate things more.” One of the things he appreciates deeply is the love of his daughters, sons-in-law and his wife, Judy, who has been by his side all the way. “If you don’t have a caregiver that loves you, you have nothing,” says the techno-wizard. Love and science is a powerful combination; just ask Winn Stephenson.

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Merck Sponsored Hepatitis C Awareness Campaigns Reach a Broad Audience In an effort to raise the awareness of the need for testing for hepatitis C, Merck Pharmaceuticals partnered with the American Liver Foundation on two landmark awareness campaigns.

Tune In to Hep C is a national public health campaign created to educate people about chronic hepatitis C and the importance of taking action. The campaign was founded because – although chronic hepatitis C treatment is advancing – public understanding of the disease isn’t moving at nearly the same pace. Merck joined forces with the American Liver Foundation, Rock ‘n Roll Hall of Famer Gregg Allman, and nine-time Grammy winner Natalie Cole to turn up the volume on chronic hepatitis C. On July 27, the eve of World Hepatitis Day, the Allman Brothers Band staged a benefit concert at the Beacon Theater in New York City. The concert sold out in 5 hours and the proceeds were shared equally by the American Liver Foundation and the National Viral Hepatitis Roundtable. Our share was $127,000.

In addition, there was a watershed of publicity where the American Liver Foundation was always mentioned.

This included the Today show, Live with Regis and Kelly, interviews with Rolling Stone Magazine, and numerous other outlets. A television PSA was developed and distributed nationwide along with a print PSA. The campaign has its own website, www.tuneintohepc.com Information is also available on the ALF website.

Merck, the American Liver Foundation, the Coalition of Positive Health Empowerment, and OraSure Technologies are sponsoring Step Up to The Plate Against Hepatitis C, a program which is offering free chronic hepatitis C testings at 13 games of Major League Baseball. The campaign is at the midpoint and to date nearly 500 people have been tested at games of the Chicago White Sox, the Chicago Cub, the St. Louis Cardinals and the Houston Astros.

The American Liver Foundation is providing outreach volunteers at each game to recruit people to come and be tested. In addition, ALF is mentioned in all the surrounding publicity, in stadium advertising and handouts and brochures. Information on this program can be found at www.allabouthepc.com or on the ALF website.

American Liver Foundation ® CORE VALUES By living these values every day, we offer hope to all those affected by liver disease.

These values guide our work as volunteers and staff of the American Liver Foundation as we move toward our ultimate goal of a world without liver disease. 

Leadership

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Integrity

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Vigilance

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Excellence

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Respect

Wish List!!

We are always in need of new computer equipment. If you are able to donate or connect us to a company who can donate computers, monitors or routers, please contact David Ticker at dticker@liverfoundation.org

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An update from the Special Gift Initiative Chair…………….

In the last issue of this publication we introduced you to the Special Gift Initiative, its purpose and its objectives. It’s been a great success already and the last few months have been incredibly busy for us.

Under the guidance of the Leadership Committee, the American Liver Foundation has not only put into place several pilot efforts to learn more about our key supporters, but has also partnered with a number of venerable Fortune 500 companies in our quest to educate America about the many faces of liver disease and what we can all do about it. All of us working on behalf of the team at the American Liver Foundation have an opportunity to make a real difference and there are many ways of doing it. I’ve spent a fair amount of time speaking to supporters, like you in Southern California to engage our friends in the highly organized process this initiative represents. Learning about what’s important to you and how together we can do more to very specifically spread the word about the easy prevention of some of the most dangerous liver diseases like “Fatty Liver” or “Hepatitis C”.

This is a very personal initiative and one that’s most successful at the grass-roots level. Sharing what we do with our friends and neighbors helps the cause directly and will bring liver disease more and more into the spotlight of America. Please do check in with us and see how you can help advance the mission of your American Liver Foundation. Call or e-mail us 212.668.1000 ext. 1121 or bfrank@liverfoundation.org

Michael Michael Hausknost Leadership Committee Chair The Journey Worth Making

For more information about the American Liver Foundation’s advocacy and volunteer opportunities contact Becky Frank at bfrank@liverfoundation.org or 212.668.1000 ext. 1121 If you would like this newsletter delivered to you via email, please send Becky an email To join our mailing list and receive the Liver Health & Wellness monthly e-newsletter, go to www.liverfoundation.org, click on Join Our Mail List

Our mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.