The American Liver Foundation Announces 2009 Research Award

American Liver Foundation Heartland Division
Liver Information
For Everyone
LIFE
Summer 2009
In this Issue
Research Awards . . . . . . . . . . . . . . . . . . . . 1
Letter from Division Vice President . . 2
Online Professional Program . . . . . . . . 2
Indianapolis Nurse of the Year . . . . . . 2
Flavors of . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Liver Life Walks . . . . . . . . . . . . . . . . . . . 4 - 5
Pediatric Liver Disease . . . . . . . . . . . . . . 6
Did You Know? . . . . . . . . . . . . . . . . . . . . . 6
Social Networking with ALF . . . . . . . . . 7
Additional Resources . . . . . . . . . . . . . . . . 7
Staff and Contact Information . . . . . . . 8
The American Liver Foundation Announces
2009 Research Award Recipients
In April, the American Liver Foundation
announced the winners of its 2009
Research Awards Program. Fourteen
scientists representing eleven medical and
research institutions were awarded nearly
$1,000,000 to support their research in the
areas of alagille syndrome, hepatic cirrhosis
and fibrosis, biliary atresia, hepatitis C, liver
grafts, polycystic liver disease, hepatic
carcinoma and primary biliary cirrhosis.
The Heartland Division would like to
congratulate two award recipients in Ohio.
Alexander G. Miethke, MD at Children’s
Hospital Medical Center in Cincinnati was
named an American Association for the
Study of Liver Diseases Liver Scholar. Dr.
Miethke is researching regulatory T cells
and the pathogenesis of biliary atresia.
Jochen Mattner, MD, also at Children’s
Hospital Medical Center in Cincinnati, was
named American Liver Foundation Primary
Biliary Cirrhosis Fund for the Cure Liver
Scholar. Dr. Mattner is studying genetic
susceptibility to primary biliary cirrhosis.
Research is integral to the work of the
American Liver Foundation and is essential
to improving treatment and finding cures.
The American Liver Foundation, in
partnership with the American Association
for the Study of Liver Diseases (AASLD), is
the nation’s largest source of grants for liver
disease research after the U.S. government.
Since the inception of its Research Awards
Program, the American Liver Foundation
has provided more than $22 million in
funding. More than 650 qualified scientists
and physicians have pursued careers in
liver disease research and treatment as a
result of receiving ALF and AASLD grants
early in their careers.
ALF is proud to support these research
efforts and hopeful that they will bring us
closer to finding cures for liver disease.
The 2010 call for applications for the
Research Awards Program will be available
in the near future. If you are a medical
professional conducting research and may
be eligible, please contact us or visit
www.liverfoundation.org for more
information about the Research Awards
Program.
Letter from
the Division Vice President
Dear friends of the American Liver Foundation,
It has been a busy and productive year at the Heartland Division!
Thanks to all who supported the Louisville and Indianapolis Liver Life
Walks and our professional education program, Liver Matters, in
Cleveland. We look forward to upcoming events, including the
Cleveland Liver Life Walk and Flavors of Indianapolis and Northeast
Ohio.
In this challenging economy and always, financial support and
volunteerism are critical to our continued success and growth.
Please consider helping in one or more of the following ways:
New Online Liver
Update for Medical
Professionals
The American Liver Foundation Heartland Division
has produced an online education program for
medical professionals specializing in primary care,
gastroenterology, hepatology or oncology. The
program, Hepatocellular Carconoma: The Growing
Disease Burden, offers information on trends in
liver cancer, including screening, diagnosis, and
treatment options. The video features hepatologist
Paul Y. Kwo, MD, of Indiana University School of
Medicine and was made possible with an
educational grant from Bayer HealthCare
Pharmaceuticals. You can view the program at
www.liverfoundation.org/hccprogram.
1.
Register to participate in one of our local events – the Liver Life
Walk in Cleveland is Saturday, August 29 (see pages four and
five), in addition to the upcoming Flavors of Indianapolis and
Flavors of Northeast Ohio on September 20 and 21 (see page
three).
2.
If you cannot attend one of our events or there is not an event
in your area, you can still help. Use one of our new tools to set
up your own personal fundraising page in honor or memory of
a loved one, for a special occasion, or to host your own
fundraising event benefiting the American Liver Foundation
(see page seven).
3.
Become a volunteer! We are seeking leaders for our local Boards
and committees, in addition to volunteers who can help to
build awareness at community events or assist with office
projects. Please call the Heartland Division for more information
about volunteer opportunities.
Congratulations to
Indianapolis’ Nurse of
the Year! Phyllis Baker
4.
Donations to further our mission are always appreciated. You
can visit our Web site (www.liverfoundation.org) to make a
donation online, call the Heartland Division to make a donation
by phone, or mail gifts to our office. Supporters may also
consider designating funds to the American Liver Foundation
through payroll deduction giving programs (see page seven).
Phyllis Baker, member of the Heartland Division’s
Board, was awarded Nurse of the Year at the
Indianapolis Star’s Salute to Nurses Awards
Ceremony on April 22, 2009. Phyllis is an advanced
practice nurse in Psychiatry Services-Substance
Abuse Treatment at the Richard L. Roudebush VA
Medical Center and an educator in the Liver
Wellness Education Clinic. This annual award
salutes the dedication and impact of nursing
professionals in the state of Indiana. Candidates are
reviewed by the Indiana State Board of Nursing,
who selects the winners based on their impact on
other individuals, experience, education,
compassion, community outreach, inspiration and
advancement of nursing. Congratulations, Phyllis,
on this great honor!
As always, thank you for your dedication to and support of our
mission to facilitate, advocate and promote education, support and
research for the prevention, treatment and cure of liver disease.
Warmly,
Natalie M. Sutton
Division Vice President
Summer Edition 09 | PAGE 2
Flavors is a national signature event of the American Liver Foundation that
takes the charity gala experience to a new level! Each Flavors event spotlights
premier regional chefs and creates a high-end, exclusive, gourmet experience
for a limited number of guests.
Each participating chef will prepare a tableside, signature, five-course,
gourmet dinner, complete with wine pairings and distinctive décor, for a table
of ten. The evening includes a cocktail reception with hors d’oeuvres from all
participating restaurants, as well as a silent auction.
Nowhere else will you witness firsthand these culinary experts creating a menu
that goes above and beyond the usual restaurant fare. Flavors gives chefs the
perfect opportunity to expand their creative juices, and they do so with gusto!
Flavors events benefit the mission of the American Liver Foundation - to
facilitate, advocate and promote education, support and research for the
prevention, treatment and cure of liver disease. Thirty million Americans - or 1
in 10 - are personally affected by nearly 100 types of liver disease.
Flavors of Indianapolis
Flavors of Northeast Ohio
Sunday, September 20, 2009
The Westin Indianapolis
6:00 p.m. Cocktails
7:00 p.m. Dinner
Monday, September 21, 2009
The Silver Grille at the Higbee Building
6:00 p.m. Cocktails
7:00 p.m. Dinner
Guests can expect a great lineup of featured chefs
for this inaugural event, including the following
chefs who have already committed their
participation.
Already, some fabulous area chefs have committed
their participation. Additional chefs are still being
confirmed.
Chef Tony Hanslits, Culinary Chair - The Chef's
Academy
Chef Glenn Brown - The Country Club of Indianapolis
Chef Matthew Bush - Flemings Prime Steakhouse &
Wine Bar
Chef Brad Gates - Euphoria and Creation Cafe
Chef Jeff Heaviland - Peterson's
Chef Chip Huckaby - Barto's Catering & Concessions
Chef Michelle Matiya - Conrad Indianapolis Hotel
Chef Peter-Paul Meyer - Hilton Hotel, 120 West Market
Fresh Grill
Chef Joseph Miller - Meridian Hills Country Club
Chef Ryan Nelson - The Oceanaire Seafood Room
Chef Layton Roberts - 14 West Restaurant
Chef Greg Schiesser - Indiana Downs
Chef Tony Smith - The Westin Indianapolis
Chef Scott Tope - Butler University
Chef Valerie Vanderpool - Zest! Exciting Food Creations
Matthew Mytro, Culinary Chair - Stove Monkeys
Rick Carson - Vue
Brandt Evans - Blue Canyon
James Foreman - Chefs for Hire
Jeff Jarrett - Lockeeper's
John Kolar - Thyme - The Restaurant
Matthew Mathlage - Light Bistro
Timothy Maxim - Muse at the Ritz Carlton
Michael Nowak - Bar Cento
Jonathon Sawyer - Greenhouse Tavern
Steve Schimoler - Crop Bistro
Kurt Steeber - Boulevard Blue
Peter Vaughty - Moxie/Red Cleveland & Sobe
Print Media Sponsor:
Print Media Sponsor:
Tickets are on sale now at
www.liverfoundation.org/flavorsofindianapolis. Or,
contact Natalie Sutton at (317) 635-5074 or
[email protected] to purchase tickets or
learn of sponsorship opportunities.
Tickets are on sale now at
www.liverfoundation.org/flavorsofnortheastohio. Or,
contact Natalie Sutton at (216) 635-2780 or
[email protected] to purchase tickets or
learn of sponsorship opportunities
™
Louisville and Indianapolis
Liver Life Walks are a
success in 2009!
More than 1,000 supporters in
Indianapolis
and
Louisville
participated in the American Liver
Foundation’s Liver Life Walks in
May and June.
On Sunday, May 17, nearly 300
participants on 23 teams came
together at Waterfront Park for the
inaugural Louisville Liver Life Walk
and raised over $33,000. A few
weeks later, on Saturday, June 13,
more than 700 walkers on 46
teams joined the American Liver
Foundation at White River State
Park for the Indianapolis Liver Life
Walk, raising more than $52,000.
Both days were filled with friends,
family and the community coming
together to support the 30 million
Americans affected by liver
disease, while enjoying music and
entertainment, food, camaraderie,
and walks through the beautiful
parks. Photos from both events are
available at
www.liverfoundation.org/walk.
If you were unable to participate, it
is not too late to make a donation
to either of these events at
www.liverfoundation.org/walk. All
funds raised at the Liver Life Walks
support the mission of the
American Liver Foundation to
facilitate, advocate and promote
education, support and research
for the prevention, treatment and
cure of liver disease. Stay tuned for
more information on 2010 Liver
Life Walks.
LIVEr Champions
Sue Doughty
May 17th was a day for celebration for all walkers in
Louisville, but it was also the four-year transplant anniversary
for Sue Doughty, our LIVEr Champion, who fought a diagnosis
of primary biliary cirrhosis (PBC), a chronic disease of the
liver that slowly destroys the medium-sized bile ducts within
the liver, to a successful liver transplant in 2005. Sue said she
could not have asked for a better way to celebrate her
transplant anniversary than at the inaugural Liver Life Walk.
Connor Gooding
Our Indianapolis LIVEr Champion, Connor Gooding,
celebrated the walk with a team of 88 friends and family
members. At four and one-half months, Connor’s parents found
him unresponsive, rushed to the Emergency Room at Riley
Children’s Hospital, and eventually watched their son undergo
a risky liver transplant surgery, staying more than four months
in the hospital. Connor had biliary atresia and alpha one
antitrypsin deficiency, but thanks to a successful liver
transplant, Connor celebrated his fourth birthday in May.
Trevor Scott
The 2009 LIVEr Champion for the upcoming Cleveland walk is
teenager Trevor Scott, who was born with polycystic kidney
and liver disease. In 2004, Trevor was diagnosed with Caroli
disease, a rare form of hepatic fibrosis that directly affects liver
function and the bile ducts. In 2005, Trevor was in desperate
need of a liver transplant when he became severely ill due to
bleeding varices in his intestines. Due to the advancement of
his liver disease, the doctors began looking into live donation
options. His cousin, Ella, was a perfect match and donated
40% of her healthy liver to Trevor on July 11, 2005. Trevor was
one of the youngest patients at the Cleveland Clinic to receive
a live liver donation. Both Trevor and Elle came out of the
surgery well and will be walking on August 29. Trevor was
recently accepted into the John Hay Early College Program,
where he will complete both high school and his first year of
college in a highly competitive and academically rigorous
three-year program.
Summer Edition 09 | PAGE 4
Top Fundraising Teams
Louisville
#1 Whitworth Walkers, led by Mary Whitworth – $3,010 and 12 walkers
#2 Louisville Livers, led by Sue Doughty – $2,340 and 18 walkers
#3 Kai’s Krusaders, led by Jasmine Hollingsworth – $1,599 and 16 walkers
Indianapolis Walk
Indianapolis
#1 Team Cornhunter, led by Robbie Mullenix-Ely – $4,035 and 99 walkers
#2 Team ARK, led by Larry Jensen – $3,975 and 33 walkers
#3 Connor’s Comrades, led by Stephanie Storm-Gooding – $2,619 and 88 walkers
Thank you to our 2009 sponsors!
LOUISVILLE
Platinum: Roche Pharmaceuticals
Gold:
Bayer HealthCare
Jewish
Transplant Care
Louisville Walk
INDIANAPOLIS
Platinum: Roche Pharmaceuticals
Gold:
Bayer HealthCare
JobCentral National Labor Exchange
Join the American Liver Foundation at the Zoo for the Cleveland Liver Life Walk
The annual Liver Life Walk in Northeast Ohio will take place on Saturday, August 29, at the Cleveland Metroparks Zoo. Grab your walking shoes, your
family and friends, and join the American Liver Foundation to support the 30 million Americans affected by liver disease. In addition to a nice walk
through the zoo, the morning will consist of food, festivities and entertainment for the whole family.
Anyone can participate in this event, which brings together patients with liver disease and their families and friends, as well as the medical community,
corporations and the broader community. There is no registration fee, but walkers are encouraged to form teams and raise funds to support the
American Liver Foundation’s mission.
When you register to participate in the Liver Life Walk, you will receive access to tools and information that will assist you in raising funds to make an
impact on the mission of the American Liver Foundation. Each Liver Life Walk registrant is provided with a personal fundraising Web site. Personalizing
this page and sending emails to friends, family, coworkers and contacts is a quick and easy way to raise funds and make an impact. All registered team
captains will also receive a team captain kit, full of ideas and tools, and walkers receive a welcome guide and walker collection envelope.
While the real motivation is raising funds for research, education, support and advocacy programs, fundraisers can also qualify for incentives, starting
with the Liver Life Walk t-shirt at the $100 level.
This year, those personally affected by a liver disease will receive a “LIVE + r = Life” t-shirt to demonstrate the magnitude of our cause and recognize the
faces of liver disease at the Liver Life Walk.
Register today at www.liverfoundation.org/walk, using the “Find a Walk” link, or call the Heartland Division office at (216) 635-2780 or (877)548-3730 to
register or get more information.
Cleveland Liver Life Walk , Saturday, August 29
Cleveland Metroparks Zoo
Check-in: 8 a.m. | Program and walk: 9 a.m.
Register today at www.liverfoundation.org/walk
or call (216) 635-2780 or (877) 548-3730.
Summer Edition 09 | PAGE 5
How does liver disease affect children?
By Molly A. Bozic, M.D. and Jean Pappas Molleston, M.D.
Indiana University School of Medicine
James Whitcomb Riley Hospital for Children, Section of Pediatric
Gastroenterology, Hepatology and Nutrition, Indianapolis, Indiana
Dr. Jean Molleston
Although liver diseases are relatively uncommon
in childhood, more than 500 children in the U.S.
undergo liver transplant each year due to severe
liver disease. This article reviews some of the
more common liver diseases in infants and
children.
Infants with liver disease typically present with
jaundice, or yellowing of the skin and eyes, in the
first few weeks of life. If jaundice persists beyond
two weeks of life, blood tests should be done to
see if the baby has an elevated “conjugated” or
“direct” bilirubin, which suggests liver disease.
Further testing is then required to find the cause
of the liver problem.
In infants, there may be several causes of liver
disease. One possible cause is biliary atresia, a
disease in which the bile ducts draining bile from
the liver do not form. Early diagnosis is
important because surgery can be helpful if
done before two to three months of age.
Another source of infantile jaundice or liver
disease is “neonatal hepatitis." This is not a
specific diagnosis, but rather a description of the
abnormalities found on liver biopsy. The
etiology of neonatal hepatitis is often not found,
but it commonly resolves on its own. About ten
percent of infants with liver disease have a
metabolic problem called alpha-1-antitrypsin
deficiency. While this type of jaundice typically
resolves, children are watched closely for the
possible development of chronic liver disease
later in childhood. In Alagille’s syndrome,
another cause of liver disease in infants, the tiny
bile ducts in the liver do not form. These children
have common characteristic facial appearances,
and often have heart murmurs and other
abnormalities in the bones and eyes.
There are various ways to determine what type
of liver disease infants may have. Testing can
include blood studies, urine tests, x-rays, or
biopsy of the liver. There are also different ways
to treat infantile liver disease depending on the
type of liver problem, although some of these
diseases do not have a specific treatment.
Medications may include vitamin supplements
and
sometimes
a
medicine
called
ursodeoxycholic acid, which makes bile flow
better. Maintaining good nutrition, sometimes
with a special formula, is important. Some forms
of liver disease such as biliary atresia, require
surgical correction of bile flow.
The most common liver disease in older children
is fatty liver or non-alcoholic steatohepatitis
(NASH). Children with fatty liver are typically
obese and may have dark skin around their neck
called “acanthosis nigricans.” NASH is often
diagnosed when routine blood testing shows
elevated liver enzymes. Liver disease may be
mild, but scar tissue in the liver and even
cirrhosis can be seen in childhood. While
research for treatment of this type of liver disease
is ongoing, the main treatment approach now is
diet and exercise with the goal of gradual weight
loss.
Another liver disease of childhood is viral
hepatitis, usually hepatitis B or C. Most children
with hepatitis B are adopted from parts of the
world where hepatitis B is common, while most
children with hepatitis C have acquired it from
their mother at birth. Both hepatitis B and C can
be transmitted through the blood. There are two
treatments available for hepatitis B, but only
children with elevated liver enzymes and active
liver disease are candidates for treatment. There
is treatment available for hepatitis C, as well.
Children with viral hepatitis, both B and C,
require regular follow-up with their doctors to
watch for increased disease activity or
development of scar tissue in the liver.
There are metabolic liver diseases of childhood
as well.
In alpha-1-antitrypsin deficiency,
abnormal protein accumulates in liver cells,
causing scarring of the liver. There is no specific
treatment for this. In Wilson’s disease, copper
accumulates in liver and brain cells, causing
damage over time. Wilson’s disease is treatable
with medication, which is important to avoid
neurologic complications from this type of
metabolic liver disease. Problems with a child’s
immune system may cause liver damage as well.
Summer Edition 09 | PAGE 6
Autoimmune hepatitis occurs when the immune
system is overactive and attacks the liver. Blood
tests suggest the diagnosis, and a liver biopsy
confirms it. Autoimmune hepatitis is treatable
with medicines that suppress the immune
system. Sometimes, liver disease can be due to
medications that the child is taking. Children
with any type of liver disease should be followed
with regular physical exams and blood tests.
Infants and children with severe and advanced
liver disease may require liver transplantation.
An extensive evaluation takes place to make sure
that the child is a good candidate. The child is
then placed on a list with a “PELD” score which
gets higher if the child is sicker. The child is
matched with a liver from a brain-dead donor,
based on blood type, size, and PELD score. Some
centers offer live-donor transplants.
There is active research on pediatric liver disease
going on at Riley Hospital for Children in
Indianapolis. Protocols studying biliary atresia,
metabolic liver disease, cystic fibrosis liver
disease, fatty liver (and soon, viral hepatitis) are
underway. A pediatric liver support group at
Riley Hospital for Children also meets several
times a year. Contact the American Liver
Foundation for more information.
Did You Know… ?
• Annual medical costs for patients with
HCV infection are expected to more than
double, from $30 billion to over $85
billion over the next 15 years.
• Studies show that the total number of
patients with advanced liver disease will
more than quadruple in 20 years.
• Non-Alcohol fatty liver is present in
two to five percent of all children.
• Between 500 and 600 pediatric
patients undergo liver transplant surgery
each year in the U.S., almost half of them
with biliary atresia, at a cost of over $134
million.
• This year, ALF has reached 18,000
students nationwide through our Love
Your Liver youth education program.
Social Networking with the American Liver Foundation
Connect on Facebook and LinkedIn...
A new Facebook application allows you to join ALF supporters from across the nation in the fight against liver
disease. You can proudly show your support and use fundraising tools. Search for “Help Me Support ALF!” to
add this application to your Facebook account. While you are social networking on Facebook or LinkedIn, join
a group for the American Liver Foundation – Heartland Division to connect locally and get updates about
local programs and events. Search for us on either site to join this group.
ALF and CaringBridge team together to offer
support! CaringBridge: A Lifeline for Patients
and Families…
CaringBridge provides free personal and private Web sites to
patients and families when someone is facing a serious health
event. A CaringBridge Web site allows the family to update
everyone concerned with just one Web site entry, rather than
making and taking countless phone calls to/from well-wishers. In
return, patients and their families can hear from hundreds of their
loved ones offering support and encouragement, and store all of
those messages in one spot.
The American Liver Foundation recently partnered with
CaringBridge to bring awareness of this beneficial service to our
community members and bring awareness of our organization to
members of the CaringBridge community. The partnership gives
patients the opportunity to create a cobranded webpage that they
can share with their friends and family keeping everyone updated
on the progress of their medical condition and/or treatment.
These free personalized pages include a patient care journal,
guestbook, photo gallery and free online support for using the
device. For more information or to create your own CaringBridge
site that gives recognition to the American Liver Foundation, visit
www.CaringBridge.org/liverfoundation. You can also find the
information on the ALF homepage (www.liverfoundation.org)
under educational resources/patients & family/Caringbridge.
Hepatitis C Indiana: a social networking site for
Hoosiers affected by Hepatitis C…
Hepatitis C Indiana is a new social networking site where those
affected by Hepatitis C, their friends and families can connect. The
site includes links to Hepatitis C groups, forums on a variety of
topics relating to hepatitis C, resources, events and more. This is a
site created by and for people with hepatitis C. Visit at
http://hep-c-indiana-ning.com.
Raise funds to save lives with a new ALF
personal fundraising Web site…
ALF is offering a new online personal fundraising Web page,
available to anyone who would like to support our mission. The
page allows you to raise money to support the fight against liver
disease year-round. You can set up a page in honor or in memory of
a loved one, for a special occasion, or to host your own ALF
fundraising event. All donations are received directly by the
American Liver Foundation and support our mission. This is a fun
and easy way to make a difference! Feel free to go online to
www.liverfoundation.org or call the Heartland Division office to set
up your personal fundraising Web page.
Additional Updates, Programs and
Resources
Concerned about the cost of expensive
medications?
Many pharmaceutical companies offer programs to reimburse or
assist patients for high-cost treatments. Call the Heartland Division
office or check with the company that produces your medication
for more information on such programs that may help.
Looking for a support group near you?
There are several support groups in Indiana, Ohio and Kentucky for
local patients with liver disease. Visit www.liverfoundation.org or
call the Heartland Division for more information on groups in your
area.
Head Back to School with the Love Your Liver
Program!
The new youth education program has been a tremendous success.
Throughout last school year and the summer, the Heartland
Division has reached nearly 1,000 students. Nationally, ALF has
educated more than 18,000 young people. This 30 to 45 minute
interactive liver wellness education program is targeted to
elementary through high-school students, educating students
about the liver and actions they can take to maximize liver health
and prevent liver disease. Love Your Liver programs also include
age-appropriate activities and games. To get your school involved,
contact the Heartland Division today.
Designate a Gift to ALF Through Workplace
Giving Programs
Many employers offer workplace giving programs, through which
employees can support charitable causes through payroll
deduction. The American Liver Foundation participates in
Community Health Charities and is eligible to receive designations
through United Way campaigns. Check with your human resources
department or contact the Heartland Division to see if you can
designate your payroll deduction contributions to support the
mission of the American Liver Foundation.
Summer Edition 09 | PAGE 7
LIFE is the official newsletter of the American Liver Foundation
Our Mission To facilitate, advocate and promote education, support and research
for the prevention, treatment and cure of liver disease.
Staff
Contact the Heartland Division
Natalie Sutton
Division Vice President
[email protected]
921 East 86th Street, Suite 150
Indianapolis, IN 46240
Kristin Gray
Development Coordinator
[email protected]
(317) 635-5074 from the Indianapolis area
(216) 635-2780 from the Cleveland area
(877) 548-3730 toll-free
(317) 635-5075 fax
Rachael Stentz-Baugher
Cleveland Event Producer
[email protected]
www.liverfoundation.org
Heartland Division
Serving Indiana, Ohio and Kentucky
921 East 86th Street, Suite 150
Indianapolis, IN 46240
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