Docstoc

alf_download_150

Document Sample
alf_download_150 Powered By Docstoc
					                                                         LIVER INFORMATION FOR EVERYONE
SPRING 2003                                               Your Education Resource for Liver Health & Diseases

                                                                                                                                      APRIL
2002 Achievements in
Liver Disease Research                                                                                                                29
                                                                                                                                          See pg 9
                                                                                                                                      for more details
There were significant contributions to liver disease research and education in
2002. Celebrities brought major attention to hepatitis and organ donation,
new and better therapies were approved and put on the market for the
treatment of chronic hepatitis, and new focus was brought to liver disease
research by the National Institutes of Health (NIH) and the Centers for
Disease Control and Prevention (CDC).
                                                                            Continued on Page 4


“Taking Strides” is a Success
Fairly sunny skies and a commitment to raising funds for research for liver diseases
inspired 741 people to participate in the 2002 Liver Walk/Run on Saturday,
October 19th! Food, prizes, children’s activities, pet stations and live
entertainment were available throughout the morning with all of the activities
led by our ever so popular walk/run emcee, Andy Shaw of ABC7. And, best of
all, members of the Illinois Chapter, their families and friends walked the course
or competed in the 5k run, raising over $90,000 for the fight against liver diseases.
                                                                                                   Inside this Issue
                                                                            Continued on Page 2
                                                                                                    3 Illinois Chapter Support Groups
                                                                                                    5 Your Liver Resource Directory
LaSalle Bank Chicago Marathon                                                                       7 NBC Health & Fitness Expo
‘An Unforgettable Event’                                                                               Liver Update

“The 25th Anniversary LaSalle Bank                  million spectators, a new women's               8 Are you eligible for
                                                                                                       Social Security Disability?
Chicago Marathon was simply                         World Record and the crowning of
unforgettable - a beautiful fall day with           Chicago's first four-time winner” is a          9 Illinois Chapter Welcomes
                                                                                                       Ironman Triathalon
a record number of finishers, nearly a              headline from the LaSalle Bank Chicago
                                                    Marathon (www.chicagomarathon.com)            10 For Your Benefit
 The American Liver Foundation-IL Chapter
                                                    and we have to agree.                         11 Gift of Hope
 27 East Monroe Street, Suite 700A                  This, ALF’s second year as a Charity          12 Liver Transplantation:
 Chicago, Illinois 60603                            Partner, was amazing as well. Our 46               What to Expect Part 1
 Phone 312.377.9030                                 member Run For Research Team                  13 PBC–Primary Biliary Cirrhosis
 Fax 312.377.9035                                   collectively raised over $55,000 in the            2003 PBC Conference
                                                                                                       Organ and Tissue Donor Plate
 info@illinois-liver.org • www.illinois-liver.org   fight against liver diseases, tripling the
 National web: www.liverfoundation.org              results of our first year. Patrick            14 Chicago Area Liver Centers
 National hotline: 800.GO.Liver (465.4837)          Bencivenga was our first runner back
                                                                                                  15 Clinical Trials
                                                                            Continued on Page 6
“Taking Strides” is a Success                                                            Continued from page 1

New to our event this year was a run          Walter. Children’s t-shirts were             were also able to reach a wider
component. At 9:15 runners and                underwritten In Memory of Robert             audience through air time donated by
walkers alike stretched under the             Healey and the dog bandanas were             101.9FM The Mix, print
direction of Tanna of Cheetah                 underwritten In Memory of                    advertisement donated by Lerner
Gym. At 9:30 over 50 runners lined            Barbara Welch. Vietnow returned              Newspapers and magazine
up for the start countdown followed           as a Pet/Water Station Sponsor, the          advertisement underwritten by
by nearly 700 walkers.                        Make-A-Wish Foundation of                    Gift of Hope Organ & Tissue
                                              Northern Illinois provided                   Donor Network.
We would like to extend our deepest                                                                              Continued on page 3
                                              children’s activities, and Neal Gerber
gratitude to all of our sponsors,
                                              and Eisenberg sponsored the
volunteers and participants who
                                              volunteer and team hats. Brookfield
contributed to the success of this
                                              Farms donated $3 for every
event. This year’s event included
                                              participant, tripling their pledge from
several repeat sponsors and many new
                                              previous years. For the fourth year
supporters of our cause. Since 1999
                                              Salvatore Ferragamo showed their
this event has been sponsored In
                                              support through another donation of
Memory of William J. McKillop.
                                              gift certificates for fabulous shoes for
All participants received a t-shirt, with
                                              awards to the category prize winners.
transplant recipients receiving a special
green t-shirt signifying the wearer is an     The day would not be complete
organ donor recipient. Sponsors,              without the wonderful refreshments
many who have been supporting this            provided by our generous sponsors:
event from its inception, included            Old Country Buffet, Corner
Andrew Corporation, Chicago                   Bakery, Brookfield Farms, Silver
Bulls, Chicago Special Events                 Creek, Damer & Cartwright,
Management, Dade Behring, Inc.,               Millstone and Three Dog Bakery.
Damer & Cartwright, Fujisawa                  Throughout the morning lively music
Healthcare, Inc., Hoogendorn &                by Red Pop Theory and Courtney
Talbot, Impact Networking, Inc.,              Kaiser kept the crowd entertained.
Lakeside Bank, Prime Group Realty
                                              For the fourth consecutive year, Andy
Trust, Roche Pharmaceuticals,
                                              Shaw of ABC7 not only emceed this
Schering Hepatitis Innovations,
                                              event but also volunteered his time as
Tantrum Events/Matt Suhar,
                                              spokesperson in a public service
Vertel’s and John and Carol
                                              announcement donated by ABC7. We

   Congratulations to the Salvatore Ferragamo Prize Winners:
     Largest Team – AD71087 (Adam Lazzaro’s Team - 4th year!)
     Team Raising the Most Pledge Money – Jane’s Jammers
     Individual Raising the Most Number of Pledges – Momir Milinovich
     Individual Raising the Most Pledge Money – Taylor Reschke

   Special Drawing Among the Prize Winners – 4 tickets to the Chicago Bulls

   Winner – AD71087

   Congratulations to all of the Run Medalists, especially the overall
   winners in the Male and Female divisions:
     Overall - Male: David Warwig, Chicago
     Overall – Female: Liz Stromquist, Chicago

   For a complete listing of medalists in the various age and gender
   categories, please contact the Chapter Office.


                                                                  2
                                          ALF-ILLINOIS CHAPTER SPONSORED SUPPORT GROUPS
“Taking Strides”
                 Continued
 is a Success from page 2
                                         Hepatitis C
 Committee/Volunteers – Our co-
                                         Arlington Heights                             Rockford
 chairs, Sherry Schmitter Block          Day:        First Monday of Each Month        Day:      Third Thursday of Each Month
 and Frank Uvena, are to be              Time:       7:00p.m. to 9:00p.m.              Time:     6:45p.m. to 9:00p.m.
                                         Contact:    Cathy Batdorf, 630.585.7660       Contact: Brenda Erwin, 815.391-5100
 commended for making this event a
                                         Location:   Northwest Community Healthcare    Location:
 reality four years ago, as well as                  Room 1-6 (Across from             Odd Months: Harlem United Methodist
 their tireless efforts to nurture its               Auditorium)                                       Church
 evolution into one of the most highly                                                              8401 North Alpine Road
                                         Aurora                                        Even Months: Brooke Road United Methodist
 visible, family friendly fundraising    Day:        Varies, Please call for details
                                                                                                       Church
 events for the Illinois Chapter.        Time:       7:00p.m. to 9:00p.m.
                                                                                                    1404 Brooke Road
                                         Contact:    Linda Ruhe, 630.585.7660
 Assisting them are some outstanding
                                                                                       Springfield
 individuals who serve on the            Chicago/Downtown                              Day:        Third Monday of each Month
                                         Day:        First Wednesday of Each Month
 Walk/Run Committee, sacrificing                                                       Time:       7:00p.m. to 9:00 p.m.
                                         Time:       7:00 p.m. to 9:00 p.m.
                                                                                       Contact:    Don Hunt, 217.789.2182, Ext. 111
 lunch hours well before the date of     Contact:    Linda Ruhe, 630.585.7660
                                                                                       Location:   Springfield Department of
 the event to iron out detail after      Location:   Loyola University
                                                                                                      Public Health
                                                     Please call for room location
 detail. For the past four years                                                                   1415 East Jefferson, Main Floor
 we’ve had the pleasure of working       Crystal Lake                                              Conf. Room
                                         Day:        Third Friday of Each Month
 with our Walk/Run Committee                                                           Spring Valley
                                         Time:       6:00p.m. to 8:00p.m.
 members Dana Bates, Merle                                                             Day:      Last Thursday of Each Month
                                         Contact:    Betty Kersting, 815.943.3597
                                                                                       Time:     7:00p.m. to 8:30p.m.
 Cooper, Suzanne Hensen,                 Location:   824 S. Main Street, Suite #206
                                                                                       Contact:  Mary Sue Goldsmith,
 Anne Orca, Libby Reinkall               Gurnee                                                  815.872.3503
 and Shirley Widener.                    Day:        Fourth Monday of Each Month       Location: St. Margaret's Hospital
                                         Time:       7:00p.m. to 9:00p.m.                        Presentation Room, 600 1st Street
 Teamwork is what brings the day         Contact:    Linda Ruhe, 630.585.7660
                                                                                       Sterling
 together and our team of volunteers     Location:   Warren Newport Public Library
                                                                                       Day:        First Wednesday of Each Month
                                                     McCullough Room
 continues to grow. In fact it’s grown                                                 Time:       6:30 p.m. to 8:00 p.m.
                                                     224 N. O'Plaine Road
 so large, we hope we haven’t                                                          Contact:    Joan Saunders, 815.626.2230
                                         Maywood                                       Location:   CGH Medical Center
 overlooked anyone’s name. Many                                                                    Classroom #2
                                         Day:      First Monday of Each Month
 of our volunteers have been with us     Contact:  Susan Long, 708.216-5454                        100 East Lefevre Road
 for several years and everyone’s                  Nancy Leone, 708.216.7930
                                                                                       Streator
 efforts are so appreciated. Our         Location: Mulcahy Outpatient Center,
                                                                                       Day:      Third Thursday of Each Month
                                                   Loyola Medical Center
 thanks to: Beatrice Addow,                        2160 S. 1st Avenue
                                                                                       Time:     6:30 p.m. to 8:00 p.m.
                                                                                       Contact:  Mary Sue Goldsmith,
 Marc Alberto, Ron Ardelean,                       Room 0100, Maywood 60153
                                                                                                 815.872.3503
 Mary Bakker, Matt Baldwin,                                                            Location: St. Mary's Hospital
                                         Naperville
 Stevie Ball, Dana Bates,                Day:        Second Tuesday of Each Month                111 Spring Street,
 John Boison, Robert Capua,              Time:       7:00p.m. to 8:30p.m.                        North Assembly Hall Lower Level

 Barb Christian, Joan and Jim            Contact:    JoAnne Sandstrom, 630.434-9312

 Conway, Tom Dominguez,                  Orland Park
                                                                                       PBC
 Djannie Edwards, Pam and                Day:        Fourth Monday of Each Month       Contact:    Ivette Williams, 773.779.7602
                                         Time:       7:00p.m. to 8:30p.m.
 Bob Grether, Suzanne and
 David Hensen, Diane
                                         Contact:
                                         Location:
                                                     Sue Biennes, 708.403.4222
                                                     Orland Township Building
                                                                                       General Liver Disease
 Jacobson, Celeste Jensen,                           15100 S. 94th Avenue              Online Support Group
 Tim Lain, Arlene Madrigal,                                                            Day:         Third Thursday of Each Month
                                                                                       Time:        7:00 p.m. to 8:30 p.m.
 Kim McCullough, Quiana
                                                                                       If interested, please send an email to
 McKenzie, Gary, Ruth and                                                                           LiverChat@aol.com
 Alison Minchon, Brad
                                         If you have any questions or would be interested in a support group
 Stanley, Chau Tu-Grier and              in your area, please contact Linda S. Ruhe,
 Chuck Zona.                             Education/Support Group Coordinator at 630.585.7660


                                                                3
Achievements in Liver Disease Research                                        Continued from page 1

Substantial advances in the             Marshal for the ALF Greater Los              Digestive and Kidney Diseases
treatment for chronic hepatitis C       Angeles Motorcycle Ride to help raise        (NIDDK). The duties of the Center
were highlighted by a panel             funds for research and appeared on           would include assisting the Liver
convened by the National                various talk shows to raise greater          Disease Research Advisory Board to
Institutes of Health (NIH) during       awareness of hepatitis C.                    develop the Liver Disease Research
the first Management of Hepatitis                                                    Action Plan, which will identify the
C Consensus Conference held in          Emerging Therapies: Patients with            scientific opportunities and priorities of
Bethesda, Maryland, June 10             hepatitis C were given a new option for      liver disease research necessary to
through 12. Among its                   treatment this year when Pegasys,            increase understanding of and to
recommendations for future              manufactured by Roche, was approved          prevent, cure and develop better
research, the panel gave top            by the FDA for treatment alone or in         treatment protocols for liver diseases.
priority to the development of          combination with ribavirin. Pegasys          ALF is optimistic about the outcome of
reliable and reproducible HCV           (pegylated interferon) was found to be       HR 5047 and looks forward to
cultures, which will advance the        as equally effective as Schering’s           assisting with the development and
understanding of its biology,           product, PEG-INTRON, and the ALF             implementation of the new Center on
mechanisms of drug resistance           applauds the availability of options for     Liver Disease Research.
and aid vaccine development. The        HCV patients.
consensus panel also endorsed the                                                    Pediatric Liver Disease: This fall,
American Liver Foundation (ALF)         In the Legal Arena: There have               the National Institute of Diabetes and
Hepatitis Council recommendation        been many advances in the fight              Digestive and Kidney Diseases (NIDDK)
for the establishment of a Hepatitis    against hepatitis B in 2002. In August,      announced the formation of the Biliary
Clinical Research Network (HCRN)        New Jersey Governor James E.                 Atresia Research Consortium (BARC) at
to conduct research related to the      McGreevey signed Assembly Bill 1888          an ALF research update held during the
natural history, prevention and         into law. AB 1888 requires all high          annual meeting of the American
treatment of hepatitis C.               school students entering grades 9-12 to      Association for the Study of Liver
                                        be immunized against hepatitis B,            Diseases. The BARC will establish a
Finally, the most promising event                                                    database of clinical information and
                                        beginning in September 2003. College
in the fight against liver diseases                                                  serum and tissue samples from children
                                        students’ immunization requirement
happened in 2002 with the                                                            with biliary atresia and idiopathic
                                        begins September 2008. It is estimated
introduction of the Liver Research                                                   neonatal hepatitis to facilitate and
                                        that 1.25 Americans have been
Enhancement Act. If passed, the                                                      perform clinical, epidemiological and
                                        infected with hepatitis B, of whom 20 -
Act would create a new center                                                        therapeutic research in these two
                                        30% acquire their infection during
within the NIH dedicated solely to                                                   important pediatric liver diseases.
                                        childhood. ALF urged the US Food and
studying diseases of the liver and
                                        Drug Administration (FDA) to expedite
helping the 25 million Americans                                                     The Journal of Pediatric
                                        review for all therapeutic agents
who have been affected by liver                                                      Gastroenterology and Nutrition (JPGN)
                                        considered for the treatment of hepatitis
disease.                                                                             published the Pediatric Liver Research
                                        B. Shortly after, the FDA announced
                                                                                     Agenda, developed by ALF's Children's
                                        approval for adefovir dipivoxil
                                                                                     Liver Council. The agenda focuses on
2002 in Review                          (Hepsera), which showed advances in
                                        therapy of the disease.
                                                                                     the impact of liver disease in children
                                                                                     and addresses such topics as biliary
The Power of Celebrity: Early this      Another triumph in liver research came       atresia, hepatitis, liver failure and
year, actress Pamela Anderson           this summer, when Congressmen Dan            transplantation. The Council then held a
announced that she had hepatitis C.     Miller (R-FL) and Stephen Lynch (D-MA)       meeting in November to determine the
Anderson bravely stepped forward to     introduced the Liver Research                best way to implement the agenda and
raise awareness of the disease. Since   Enhancement Act, HR 5047. The bill,          develop advocacy efforts that will lead
her announcement, she has created a     which will be reintroduced this year,        to greater research funding for
public service announcement for the     established the National Center on           pediatric liver disease.
American Liver Foundation (to be        Liver Disease Research, part of the
                                                                                     Recently, the FDA announced its
released shortly), acted as Grand       National Institute on Diabetes and
                                                                                     approval for a combination vaccine for


                                                           4
                                              Your Liver Resource Directory
infants that includes protection from      American Liver Foundation              Health Policy Analysts
diphtheria, tetanus, whooping cough        Headquarters                           1350 1 St. N.W. #870
(pertussis), polio and hepatitis B.        75 Maiden Lane #603                    Washington, DC 20005
Previously available as separate           New York, NY 10038-4810                Ph: 202.588.5305
vaccines, the Pediarix vaccine safely      Ph: 212.668.1000                       Fax: 202.737.1947
combines all the components.               Ph: 800.GO.Liver (465-4837)
                                           Ph: 888.4HEP.USA (443-7872)            Immunization Action Coalition
                                           Fax: 212.483.8179                      1573 Selby Ave. #234
Liver Toxicity and OTC
                                           www.liverfoundation.org                St. Paul, MN 55104
Medication: A 2002 study                                                          Ph: 651.647.9009
demonstrated that acetaminophen was        Americans with Disabilities Act        Fax: 651.647.9131
the leading cause of acute liver failure   Information                            www.immunize.org
in the United States. Acetaminophen,       U.S. Department of Justice             www.vaccineinformation.org
normally a very safe drug, can cause       Civil Rights Division
liver injury when dosed incorrectly        950 Pennsylvania Ave., NW              Laboratory Center for Disease Control
under certain conditions. This is          Disability Rights Section - NYAV       Main Status Building
particularly a problem in the pediatric    Washington, DC 20530                   Tunney's Pasture A.L. O601E2
                                           Ph: 800.514.0301                       Ottawa, Ontario K1AOL2
population. Well-meaning parents
                                           Fax: 202.307.1198                      Canada
administering multiple doses can reach
                                           www.ada.gov                            Ph: 613.954.5205
a toxic dose, inadvertently resulting in                                          Fax: 613.952.6668
liver injury. Responding to the                                                   www.health.gc.ca
                                           Asian and Pacific Islander American
widespread problem, ALF Associate
                                           Health Forum
Medical Director Caroline Riely, MD,       942 Market St., #200                   National Digestive Diseases Info
provided important testimony to the        San Francisco, CA 94102                Clearinghouse
FDA’s Non-Prescription Drug Advisory       Ph: 415.954.9988                       2 Information Way
Committee. ALF urged the Committee to      Fax: 415.954.9999                      Bethesda, MD 20892-3570
better educate patients, to make           www.apiahf.org                         Ph: 301.654.3810
package warnings easier to read and                                               Fax: 301.907.8906
                                           Centers for Disease Control &          www.niddk.nih.gov
make sure that regular doses, not just
“Extra Strength,” are readily available    Prevention
                                           Division of Viral Hepatitis            National Foundation for Infectious
to consumers.
                                           Mailstop G-37                          Diseases
                                           1600 Clifton Rd., NE                   4733 Bethesda Ave. Suite 750
Looking Forward in 2003:                                                          Bethesda, MD 20814
                                           Atlanta, GA 30333
Significant advances have been made        Ph: 800.311.3435                       Ph: 301.656.0003
in the struggle to prevent, treat and      or Ph: 404.371.5900                    Fax: 301.907.0878
cure hepatitis and other liver diseases    Fax: 404.371.5221                      www.nfid.org
this past year, but much more must be      www.cdc.gov
done. In 2003, ALF will focus on                                                  National Institute of Health
having HR 5047 enacted, creating           Foundation for Digestive               9000 Rockville Pike
public policy that supports and expands    Health & Nutrition                     Bethesda, MD 20892
                                           4930 Del Ray Ave.                      Ph: 301.496.1776
organ donation, supporting the
                                           Bethesda, MD 20814                     Fax: 301.402.0601
Department of Veterans Affairs efforts                                            www.nih.gov
                                           Ph: 301.222.4002
to treat veterans with hepatitis and
                                           Fax: 301.222.4010
other liver diseases and expanding                                                Social Security Administration
                                           www.fdhn.org
the Centers for Disease Control and                                               800.772.1213
Prevention (CDC) effort to control                                                www.ssa.gov
and reduce the impact of hepatitis.
Our goal is to make 2003 another
groundbreaking year in liver
disease research.                                   If you would like to be added to the LIFE Resource Guide,
                                                            call the Chapter Office at 312.377.9030

                                                              5
LaSalle Bank Chicago Marathon                                                             Continued from page 1

with a time of 3:23:57, he also came in          team with him. “Who is Patrick                  His mom, who has hepatitis C, is his
first in the pledge arena, raising over          Bencivenga?”, you ask… Patrick lives            inspiration for running the Chicago
$8,000 in pledges. Patrick says he’ll be         in Brooklyn, New York. He’s an avid
back next year and he’s bringing a               marathoner and thought that he’d like
                                                 to run one in Chicago. Patrick
                                                 registered for the marathon online.
   2003 Run for Research                         He then followed the link to the
   Executive Steering
   Committee Members:
         David Brown
         Greg Ciaciura
         Larry Decker
         Doug Doolittle
         Robert Goldstein
         Bill Hackney                                                                            Marathon and raising pledges. Some
         Dr. Donald Jensen                                                                       of us in the office, on our Board and
         Dave Louthan                                                                            some of his fellow runners had the
         Greg Mann                                                                               pleasure of meeting both Patrick and
         Mindy Morales
                                                                                                 his mom.
         David Sherman
                                                 Charity Partners and saw the American
         Mark Timmerman                                                                          Planning has already begun for the
         David Spak                              Liver Foundation – Illinois Chapter
                                                                                                 2003 marathon which will be held on
         Georgia Viscomi                         and clicked on our logo to check out
                                                                                                 October 12th. The private gear check
                                                 our website. What inspired him to run
                                                                                                 tent will again be heated (a really big
   Thank you to Judy Sweet for assisting         for us though, we can not take credit
   with all the meeting arrangements!                                                            deal for those of you who weren’t able
                                                 for: Patrick has had a Patient Partner
                                                                                                 to come out that cold crisp morning
                                                 before he even knew what that was.



   2002 Run for Research Team Members
   Rose Altschul           Jennifer Casciani     Henry Gentile       Louis Lara              Grant Pothast          Mark Timmerman
   Chloe Anderson          Karen Coleman         Mike Gleason        Danielle Levandowski    Joel Redeker           Tom Weiss
   Alan Barenberg          Jennifer Desser       Robert Goldstein    Scott Lyons             Bethany Rentz          Allen Woolley
   Patrick Bencivenga      Doug Doolittle        Bill Hackney        Don McKevitt            Junghyun Seo           David Wyrick
   Richard Bergman         Bob Ellis             Robert Herskovitz   Norine Mosele           David Sherman          Kim Zielinski
   Paul Brouillette        Alan Fisher           Kelly Hofmann       Eric O’Connor           Stuart Sorrel          Max Zielinski
   David Brown             Maria Gatto           Dr. Donald Jensen   Clare O’Donnell         David Spak
   Kiley Brown             George Gatto          Robert Kelly        Tom Perry               Jeremy Sullivan


   A very special thanks to all of the vendors who                        Volunteers for the 2002 Run
   partnered with us to provide incentives for the 2002                   for Research Team:
   Run for Research Team:                                                 .........................................
                                                                          Rebecca and Larry Decker             Dave Louthan
    Adventures in Advertising              Fleet Feet
                                                                          Jacqueline and Tom                   Lanie Mueller
    CARA (Chicago Area Runner’s            Gazelle Sports                  Dominguez                           David Sherman
           Association)                    Impact                         Djanne Edwards                       Brad Stanley
    Body ‘N Sole                           Kiddles                        Kim Fitzpatrick                      Georgia and Bob Viscomi
    Cliff Bars                             New Balance                    Anne and Randy Jesky
    The Competitive Foot                   Running Right Plus
    Dick Pond Athletics                    Vertel’s


                                                                     6
                                          NBC5 Health & Fitness Expo
                                          Superbowl weekend was exciting      David Rehm and Gloria Walters
                                          for a whole different reason than   who graciously volunteered to
                                          you may think.      Thousands of    help staff our booth. Thanks also
                                          people flocked to Navy Pier for     to Gift of Hope and Secretary of
                                          the NBC 5/Telemundo Chicago         State, Jesse White’s Office who
                                          44 Health & Fitness Expo. The       joined us in our booth to promote
                                          ALF – Illinois Chapter was proud
                                          to be invited to exhibit. We had
                                          a great weekend, providing
                                          information, creating awareness




                                                                                                                               l
                                                                                                                            pu
                                          of liver diseases and promoting




                                                                                                                          ee
                                                                                                                     w
                                                                                                                      a
                                                                                                                   is
                                          organ   donation.    Thank   you                             * th
                                                                                                              is

before the sun even rose). We’re          Dr. Thelma Wiley, from the          organ donor awareness.                 The
definitely going to bring back the
                                          University of Illinois at Chicago   word definitely got out; you could
massage therapist, and, of course, our
runners will be eligible for some great
                                          Medical Center, and Dr. Helen Te,   see people all weekend walking
                  pledge based            from the University of Chicago      through Navy Pier with little
                  incentives.             Hospitals for giving talks on the   weepuls* on their shoulder. Our
                  Marathon                risk factors of Hepatitis C. We     participation at this wonderful
                  registration is         also extend our thanks to Tuesday   event was made possible through
                  currently open. This
                                          Austin-Brown, Samantha Hall,        a generous grant from Roche
                  year we are also
                  looking for a
                                          Anne Jeskey, Randy Jeskey,          Pharmaceuticals. Thanks Roche.
                  volunteer force.
                  Among other                                   Liver Update
                                                     Thursday, March 20th
                                          Bonnie C. Minsky, MA., M.P.H., C.N.S., L.N.C.
                                           Nutritional Issues Related to Liver Disease
                                                          7:00-9:00 p.m.
                                                   Lutheran General Hospital
activities, you could hand out water at      Parkside Pavillion, Johnson Auditorium
practice runs along the lakefront, come
in and make calls to our runners, put
                                             1775 Dempster St., Park Ridge, IL 60068
fund-raising packets together and help            Call Chapter Office for more
mail them out, man the ALF booth at
the Health and Fitness Expo, or come
                                                    information or to register
out and cheer for the team at the ALF                           312.377.9030
cheering section along the marathon
route. Join the volunteer team and get        Online Support Group/General Liver Disease
a free Run For Research t-shirt. For              Group will meet regularly on the third
more information, call Lanie at
                                                   Thursday of each month at 7:00 p.m.
312.377.9030.
                                                       Register at LiverChat@aol.com

                                                        7
Are YOU eligible for
         Social Security Disability?
The Social Security Administration contacted the                your doctors, clinics and hospitals
Illinois Chapter and asked us to share some facts             • Names of all medications you are taking
with our members, especially those preparing for a            • Names of your employers and job duties for the
transplant. These facts will help you discuss your              last 15 years
eligibility with the experts at your transplant center.       • If you are filing for a child, you also need school
                                                                records regarding your child's disability.
The Social Security Administration makes disability
payments under two programs:                                  IMPORTANT NOTE: Don't wait to file your claim for
• Social Security Disability Insurance for workers            disability payments even if you don't have all this
  (and their children or surviving spouses) who have          information.
  Social Security coverage.
• Supplemental Security Income (SSI) for people               WHAT HAPPENS NEXT?
  with little or no income and resources.                     • Information received will be sent to the disability
                                                                determination agency in your state.
DO YOU HAVE A DISABILITY?                                     • Claims specialists and doctors there will:
• Adults must have a physical and/or mental                       – review what you have given us, and make a
  problem that keeps them from working for at least                 decision if there is enough information,
  12 months, or is expected to result in death.                               or
• Children must have a physical and/or mental                     – request any additional information they need,
  problem that prevents them from doing things that                 and if necessary, ask you to have an exam or
  children the same age normally do.                                special test at no cost to you.

HOW DO YOU START?                                             • Once a decision has been made, you will be
• If you think you may be eligible for payments, call           notified.
  the Social Security Administration at 1-800-772-               – If you claim is approved, you will receive your
  1213 to file a claim, or contact your local Social               payment amount and when payments will
  Security office. If you want someone to help you,                begin.
  such as a family member, caseworker or other                   – If your claim is denied, you will be notified of
  representative, that person may contact them for                 your appeal rights
  you.
                                                              REMEMBER you can call 1-800-772-1213 if you
WHAT ELSE DO YOU NEED TO DO?                                  have questions or need more information. People
You will get a faster decision if you provide:                who are deaf or hard of hearing may call the toll-
• Your Social Security number                                 free "TTY" number, 1-800-325-0778, between 7
• Medical records from your doctors, therapists,              a.m. and 7 p.m on business days.
  hospitals, clinics and caseworkers
• Laboratory and test results                                 Social Security Administration SSA Publication No.
• Names, addresses, phone and fax numbers of                  05-10057 August 2001



                                                          8
Illinois Chapter Welcomes                                                                  Taking the
Diana Cázares,                                                                             Marathon a
COMMUNITY EVENTS COORDINATOR                                                               Few Steps
Diana joined our staff in November 2002 and brings over 9 years experience in
sales promotions, sponsorships and event marketing in Chicago. Among her                   Further
many responsibilities, increasing our fundraising success is a priority. She has           George Economos, Promotional
already developed new sponsorship proposals and has met with our Spring Benefit            Manager of The Mix Radio Station,
Committee to make sure that “Celebrating Life” is a wonderful event! Diana has             has been competing in endurance
also created a volunteer program and has added 30 volunteers to our organization           events for over the last decade. Three
in just four months! Welcome, Diana.                                                       years ago he decided to test his limits
                                                                                           by entering the Mrs. T’s Triathlon and
T homas G. Estey,                                                                          the Chicago Marathon. Last year, he
BOARD OF DIRECTORS                                                                         competed in the Ironman Triathlon
Tom is a Senior Vice President of Commercial Banking for LaSalle Bank. He is               with a finishing time of 15 hours, 2
married with two children and is involved with AYSO soccer and the Indiana                 minutes and 41 seconds! The
Guides. Tom has already expressed great interest in becoming involved in our               Ironman Triathlon includes 2.4 miles
fundraising efforts, particularly the Golf Classic. For many years, LaSalle Bank has       of swimming, 112 miles of biking and
supported the activities of the Illinois Chapter and we feel Tom’s expertise and           a 26.2 mile run.
sense of community will help us achieve even greater success. Welcome, Tom!                George’s competitive success was not
                                                                                           just a matter of building his physical
Cynthia Helphingstine, PhD, MBA                                                            stamina - he also challenged himself
BOARD OF DIRECTORS                                                                         to help local community
Dr. Cynthia Helphingstine is President and Founder of The Biotron Group, a                 organizations by convincing his
consulting firm focused on assessing new technologies and markets and developing           friends to sponsor his race mileage.
creative business strategies for the biotech and healthcare industries. She is an          “One of the greatest incentives for
active supporter of these industries and will assist the Illinois Chapter in identifying   completing the Ironman is knowing
ways in which we can partner with them. Cynthia resides in Highland Park with              that I am helping someone else who
her son and retired greyhound racer. She is an avid practitioner of yoga and has a         might not be able to compete,
deep respect for yoga as a method of maintaining a healthy lifestyle. Welcome aboard!      knowing that I can make a difference
                                                                                           in someone else’s life”, George
                                                                                           explained.

Spring Benefit- April 29th                                                                 George volunteered his time at the
                                                                                           2002 Liver/Walk Run and decided to
 Our 9th Annual Spring Benefit Dinner and Auction, Celebrating Life,                       select the Illinois Chapter as one of
will be held on Tuesday, April 29th, 2003 at the Hyatt Regency                             his charities for 2003. As an added
Chicago. This event provides an opportunity for nearly 500 guests to                       incentive, if George is the top

honor leaders who are dedicated to fighting liver diseases. Among                          fundraiser, the Janus Charity
                                                                                           Challenge will donate $10,000 to
our honorees this year is J. Michael Millis, MD of the University of
                                                                                           the ALF.
Chicago Hospitals, for his unparalleled successes in the area of liver
transplantation and development of innovative surgical techniques;                         If you would like to sponsor George,
Frank J. Uvena, for his outstanding leadership with the Illinois                           please send your donation to the ALF,
Chapter and the National American Liver Foundation Board of                                27 E. Monroe, Suite 700A,
Directors; and Patrick Bencivenga will receive the Spirit Award for                        Chicago, IL 60603
                                                                                           Attn: G. Economos or call
his tremendous efforts on behalf of our Run for Research Team.
                                                                                           us at 312.377.9030
                                                                                           to use your credit card.
Watch your mail for your invitation. Contact
Diana at the Chapter Office for details.
                                                                   9
For Your Benefit…
Financial Considerations for Those Who Have Been Diagnosed with Hepatitis C

By Mike Ziegler

When someone is diagnosed with hepatitis C, dozens of questions run          2. Assess Your Expenses:   Now that you have an understanding of what
through their mind, “Will I have to change my lifestyle due to hepatitis
                                                                                 is covered by your insurance company, you can begin to assess how
C? What can be done to treat hepatitis C? Have I exposed my family to
                                                                                 much you will need to spend on medical expenses. It is important to
hepatitis C?, What doctor should I see to treat hepatitis C?, etc…” It is
                                                                                 plan and budget how you will handle your medical expenses. You
important for your peace of mind, general health, and the treatment of
                                                                                 should try to anticipate how much you will need to spend on a
hepatitis C to receive answers to these questions.
                                                                                 monthly basis.

As we are addressing these questions, we must also look into the
financial aspects of having hepatitis C. Just as living with hepatitis C     3. Assess Programs to Lessen Your Medical Expenses:     Upon assessing
may require you to change your eating and drinking habits, you also              their insurance coverage & medical expenses, some patients find that
need to be prepared for the changes in medical expenses associated with          they do not have the financial resources available to receive
treating and living with hepatitis C. Below are some financial guidelines        treatment for hepatitis C. There are options available for these
that patients with hepatitis C should follow.                                    patients. Below are listed some options a patient may look into.

                                                                                     a. Investigational Studies: Many hepatologists have the
1. Assess Your Insurance Coverage:  Many patients are aware that they
                                                                                        ability to enroll patients in “investigational studies”. Often
   have “health insurance”, but are unaware of what is covered. To
                                                                                        times these “studies” provide patients with treatment
   understand what your hepatitis C medical expenses will be, you
                                                                                        options that are similar or more advanced than the
   should complete the following survey.
                                                                                        standard hepatitis C treatments. Many studies provide the
                                                                                        MD office visits, labs, tests, and the cost of medication.
a. Does your insurance plan cover hospitalization? Yes_____ No_____                     Therefore, the cost to the patient is greatly reduced. A list
   If yes, at what percentage will they cover the bills? __________                     of studies on going in the Chicago area can be found on
                                                                                        page 5.
b. Does your insurance plan cover MD office bills? Yes_____ No_____
   If yes, at what percentage will they cover the bills? __________                  b. Manufacturer Assistance Programs: Some patients have
                                                                                        coverage for hospitalization and physician bills, but do not
c. Does your insurance plan cover labs & blood tests? Yes_____ No_____                  have prescription coverage. Therefore, they cannot afford
   If yes, at what percentage will they cover the bills? __________                     the hepatitis C treatments. All of the manufacturers of
                                                                                        hepatitis C medications have assistance programs for
d. Do you have coverage for oral prescription drugs? Yes_____ No_____                   patients without prescription coverage. Ask your health
   If yes, where can you get Rx’s:                                                      care provider for contact information for the drugs he/she
                 local pharmacies_______ mail order ____                                recommends.
   What is your copayment per each Rx? ___________________
                                                                                     c. Other Available Assistance Programs: There may be other
e. Do you have coverage for injectable drugs? Yes_____ No_____                          government or community programs available to patients
   If yes, where can you get Rx’s:                                                      that cannot afford their healthcare. These programs
                 local pharmacies_______ mail order ____                                depend on income, where you live, and several other
   What is your copayment per each Rx? ___________________                              factors. If you would like to see if you qualify for any
                                                                                        additional programs, please contact the ALF. They will put
f. What is your health insurance “deductible”? ___________________                      you in contact with people who can help identify programs
  (A deductible is the annual amount you must pay before your health                    for you may qualify.
  insurance will begin covering your medical expenses.)
                                                                             Mike Ziegler is a partner at Damer & Cartwright Pharmacy. He has
g. What is your “out of pocket maximum”? ___________________                 over 10 years experience in helping patients handle financial issues that
   (An “out of pocket maximum,” is the total amount you may need to          pertain to healthcare and reimbursement of prescription medications.
   pay annually for your medical expenses. Please note, in most cases,       Mike regularly shares his expertise with our membership and we are
   prescriptions do not apply to out of pocket maximums)                     most appreciative.




                                                                            10
Gift of Hope Organ & Tissue Donor Network is a wonderful friend of the American Liver Foundation-Illinois
Chapter. Last year, through the generosity of 289 families, Gift of Hope Organ & Tissue Donor Network
provided 929 lifesaving organs for transplant. In addition, 947 families consented to tissue donation, enabling
thousands of patients to receive medical transplants of heart valves, bone, corneas and other tissue. For detailed
information on the services of Gift of Hope, visit its website at www.giftofhope.org or call them at 630.758.2600.

Listed below are some of the programs supported by the Gift of Hope in 2003.

Making Donation Happen: Focus on the Family,                        educational workshops, sharing sessions and a quilt
April 3                                                             pinning ceremony.
An interdisciplinary education seminar for hospital
physicians, nurses, administrators, allied staff, funeral           National Minority Donation Awareness Day
directors and coroners in central Illinois. General and             In 1996, the U.S. Congressional Task Force on Organ and
breakout sessions will address key issues and elements of           Tissue Donation designated Aug. 1 as National Minority
the donation process and the continuum of care for the              Donor Awareness Day to raise awareness about the need for
donor family. 8:30 a.m.–4 p.m., Renaissance Springfield             organ and tissue donation among all minority
Hotel, 701 E. Adams, Springfield.                                   communities.


National Organ and Tissue Donor Awareness Week,                     National Donor Sabbath, Nov. 14-16
April 20-26                                                         National Donor Sabbath is observed nationally each year to
In 1983, Congress designated the third full week in April as        address donation and transplantation from a faith based
National Organ and Tissue Donor Awareness Week to                   perspective. Gift of Hope Organ & Tissue Donor Network,
honor the generosity of organ and tissue donors whose               along with its hospitals, volunteers and allied organizations
gifts give others a second chance at living. Gift of Hope           coordinate and sponsor numerous events, displays and
Organ & Tissue Donor Network, along with its hospitals,             programs throughout the weekend.
volunteers and allied organizations coordinate and sponsor
numerous events, displays and programs throughout the               Public Education Program
week and the entire month of April. During Donor Week,              Every year, Gift of Hope Organ & Tissue Donor Network
U.S. Secretary of Health and Human Services Tommy                   provides more than 700 public education programs about
Thompson also will preside over the dedication ceremony             organ and tissue donation for schools, civic organizations,
for the National Donor Memorial, which will be built in             churches, businesses and other organizations throughout
Richmond, Virginia, headquarters of the United Network              Illinois and northwest Indiana.
for Organ Sharing (UNOS). Details about local activities            These programs include brown-bag lunch presentations
forthcoming!                                                        for businesses, information displays, health fairs and talks
                                                                    by donor families, transplant recipients or Gift of Hope
National Donor Recognition Ceremony and                             professionals. Brochures and other educational information
Workshop                                                            also are provided.
In odd-numbered years, this event sponsored by the U.S.             To request a program, contact Mike Henderson, Public
Department of Health and Human Services and the                     Education Coordinator, at mhenderson@giftofhope.org
National Kidney Foundation is held in Washington DC to              or 630/758-2743.
recognize living and deceased donors and their families.            In central Illinois, contact Terri Cagle, Community Relations
The weekend features a donor recognition ceremony,                  Specialist at tcagle@giftofhope.org or 217/789-9363.

                                                               11
Liver Transplantation: What to Expect
Part 1: Preparing for Transplant
The following is the first part in a series of   the patient to a Gastroenterologist (doctor    committee meeting to determine transplant
three articles about liver transplantation.      specializing in disorders of the stomach       candidacy. The financial coordinator
The Illinois Chapter would like to thank         and intestines). If the Gastroenterologist     contacts the insurance company. If the
Myriam Davis, RN, MS; Cathie Solcani,            feels that the individual needs to be          patient is accepted for transplant by all
RN, MS; Melissa Zinnerman, RN, MSN -             evaluated by a Hepatologist (doctor            involved parties, then the patient is listed
Adult Liver Transplant Coordinators at The       specializing in liver disease) the patient     for liver transplant with the United
University of Chicago Hospitals                  makes an appointment or calls the              Network for Organ Sharing (UNOS).
(773.834.4601) for this submission.              transplant center for further evaluation.
                                                                                                UNOS is a not-for-profit organization that
Liver disease affects people in many             Once the patient has established contact       works with the department of Health and
different ways. Some individuals will have       with the transplant center and arranged        Human Services to allocate organs for
complete resolution of the problem while         an appointment, all pertinent clinic notes,    patients in need of transplant. The data
others may go on to develop scarring of          x-rays, CT scans, test results, and liver      required by UNOS for listing a patient for
the liver also known as cirrhosis. The           biopsy slides should accompany the             transplant involves blood type, height,
symptoms of liver disease may vary               patient at the initial appointment. At that    weight, hospital where patient is listed,
significantly. Individuals may experience        time, the physician and transplant             demographic information, along with
fatigue while others will have yellowing of      coordinator will review the studies and        socioeconomic information about the
their eyes and skin, commonly referred to        determine if any additional tests are          patient. The collective data (medical,
as jaundice. Severe itching is also a            needed.                                        demographic, and socioeconomic) is
common complaint.                                                                               made available to UNOS. Once the
                                                 The patient will have a physical
                                                                                                patient is listed, communication lines are
Some individuals with cirrhosis may have         examination at his initial appointment. A
                                                                                                established with the team members which
abnormal liver function blood tests only,        medical history is obtained along with a
                                                                                                may entail purchasing a cellular phone
while others might experience increased          review of his previous medical records.
                                                                                                and or pager.
bruising, fluid accumulation around the          The transplant team will determine if a
abdomen commonly referred to as ascites          patient should proceed with immediate          Waiting for an organ is extremely hard
or even confusion also known as                  transplant work up based on physical           for patients and family members. How
encephalopathy. Encephalopathy can               findings as well as current lab results. The   long a patient waits varies from patient to
vary in severity from confusion to coma if       transplant workup may vary among               patient and state to state. It depends on
left untreated. Bleeding may also occur          transplant centers. Since liver transplant     many factors: patient’s blood type (A, B,
because the blood does not clot                  is a complicated surgical procedure,           O, AB), patient’s size, donor size, the
effectively. There may also be poor blood        extensive tests are done on the patient’s      degree of illness and most importantly
flow and drainage caused by liver                heart, lungs and kidneys to ensure a           donor availability. These are some of the
scarring. Not all individuals with cirrhosis     successful surgery.                            issues that play a part in the waiting
will experience bleeding, however if                                                            process. Patients are encouraged to shift
                                                 If abnormalities are detected, further
vomiting of blood or black tarry stools                                                         their focus from their illness and the
                                                 testing may be necessary. Some patients
occur, please seek immediate medical                                                            waiting time to more positive
                                                 may have to be evaluated by a
attention. In some of the more advanced                                                         avenues…live their life, participate in
                                                 cardiologist (heart doctor), pulmonologist
cases of cirrhosis liver transplantation                                                        family activities, go on vacations and not
                                                 (lung doctor) or other specialist to
may be indicated.                                                                               sit at home anxiously awaiting that call.
                                                 determine the extent of the abnormalities
                                                                                                The call may never come due to organ
Liver transplantation is a treatment option      identified. In addition, the patient will
                                                                                                availability and severity of illness.
for some patients with severe liver              have to see a social worker, dietician,
                                                                                                Transplant is just one part of life, although
damage or patients who have liver                transplant surgeon and possibly a dentist.
                                                                                                a very important part for many, it should
cancers within defined parameters. In            After the entire workup is completed the
                                                                                                not be the only focus in life.
most cases, a primary care doctor refers         patient will be discussed at a transplant


                                                                       12
PBC—Primary Biliary Cirrhosis                                                                              Organ and Tissue Donor
                                                                                                           Awareness License Plate
Over the past several years, PBC                     Mason, and Dr. Neil D. Thiese and
(Primary Biliary Cirrhosis) has received             up and coming PBC researchers such                    The Illinois Secretary of State’s office has

significant attention from the                       as Dr. Konstantinos Lazaridis, who                    created the Organ and Tissue Donor
American Liver Foundation (ALF) both                 received a PBC post doc to start                      Awareness plate.          The plate honors
in staff time and research dollars.                  his career.                                           thousands     of   recipients   and    donors,
Since 1998, ALF has awarded $600,000                                                                       including the late Walter Payton who was
                                                     ALF is eager to award two PBC
in PBC research, plus $50,000 to create                                                                    waiting for a liver transplant when he
                                                     research grants this fiscal year. It is
the PBC Research Agenda which is                                                                           learned his illness was much more serious.
                                                     redoubling its search for innovative
designed to increase awareness, and                                                                        The plate is navy and orange with the
                                                     and well-formulated projects to fund.
more specifically, generate more
                                                     The grants are on two levels: clinical                “Life Goes On” logo and a Chicago Bears
interest in the scientific community
                                                     and biomedical. The ALF pledges to                    football.
towards PBC research.
                                                     increase the work being done on
                                                                                                           The Organ and Tissue Donor Awareness
Research money was awarded                           PBC research. Much has been
                                                     accomplished but the ALF continue                     plate first became available during the
primarily as seed grants in 1998-2000
to well known PBC researchers such                   its relentless pursuit of a cure                      summer of 2001, and continues to be a
as Dr. M. Eric Gershwin, Dr. Andrew L.               for PBC.                                              popular specialty plate. Regular and vanity
                                                                                                           plates are available with five total letters

2003 PBC CONFERENCE                                                                                        and numbers. Those who order the Organ
                                                                                                           and Tissue Donor plate will be charged an
“Progressing Through Education, Research & Support”                                                        additional cost with a portion of this fee
Sunday, May 4 through Thursday, May 8, 2003                                                                going directly to promote organ and tissue
Biloxi, MS                                                                                                 awareness programs across Illinois.

The purpose of this medical conference is to provide PBCer’s, other liver disease                          Please call 217.785.5215 if you
patients, family members, friends and the medical community a chance to learn                              have any questions or need an
about current liver disease research, new treatments, share experiences and have
                                                                                                           application. More information can
some relaxing fun.
                                                                                                           be     obtained         on-line       at    the
Chairperson: Linie Moore                                                                                   Secretary of State’s web site at
                                                                                                           www.cyberdriveillinois.com.
For more information visit their website at www.pbcers.org



                                                A Truly                 Special                Gift
Making a donation to the ALF Illinois Chapter can be a wonderful tribute to someone special. It is a thoughtful way to recognize someone on special
occasions, such as a birthday, anniversary or holiday. These gifts are a gratifying way to honor someone while supporting ALF’s efforts to prevent, treat,
and cure liver diseases. Also, donating in memory of someone shows sentiment to his/her family and loved ones. When a donation is sent as a memorial
or tribute, an acknowledgement is sent as specified. The amount of the gift is not indicated. Every gift is tax-deductible and the donor receives proper
documentation. Please make checks payable to the American Liver Foundation - Illinois Chapter


In memory / honor of (circle one):________________________________               s $15       s $25      s $50     s Other $____________
On the occasion of: _____________________________________________
                                                                                 s Check       s Visa     s MC         s AMEX
Send the appropriate acknowledgement to:
                                                                                 Credit Card# ___________________________________Exp. Date ___/___
Name __________________________________________________________
Address ________________________________________________________                 Name as it appears on card (please print)
City ______________________________ State ______ Zip _____________                ________________________________________________________________
Send my receipt to: _____________________________________________                Signature
Name __________________________________________________________                   ________________________________________________________________
Address ________________________________________________________
                                                                                       Return to: American Liver Foundation - Illinois Chapter
City ______________________________ State ______ Zip _____________
                                                                                                27 E. Monroe #700A Chicago, IL 60603
Phone ______________________________
                                                                                                           or fax 312.377.9035
                                                                           13
                                        Chicago Area Liver Centers
Central DuPage Liver Health                    Li Shilun, MD                      Gastroenterologists:                            Karan Emerick, MD
Center                                         Stephen Sontag, MD                    Mark Demeo, MD*                              Humberto Soriano, MD
25 North Winfield Road                         Edwin Zarling, MD, FACP               Ali Keshavarzian, MD*                        Peter Whitington, MD
Winfield, IL 60190                                                                   John Losurdo, MD*
                                           Northwestern Memorial Hospital                                                 Pediatric Gastroenterologists:
630.933.5483                               675 North St. Clair                    *also sees patients at the Oak Park         B. Li, MD
Hepatologist:                              Suite 15-250                           office                                      Suzanne Nelson, MD
   Daniel Ganger, MD, FACP                 Chicago, IL 60611                      ** has offices in Highland Park             Timothy Sentongo, MD
                                           312.695.5620                           and Skokie
Gastroenterology & Liver Disease                                                                                          University of Chicago Hospitals
Specialists (at Lutheran General)          Hepatologists:                         University of Chicago Hospitals         5841 S. Maryland Avenue,
1875 Dempster, Suite 410                      Alfred Baker, MD                    5841 S. Maryland Avenue,                MC 4076
Park Ridge, IL 60068                          Andres Blei, MD                     MC 4076                                 Chicago, IL 60637
847.318.9595                                  Steven Flamm, MD                    Chicago, IL 60637                       773.702.6418
                                              Richard Green, MD                   773.702.2394
                                                                                                                          Pediatric Hepatologists:
Hepatologist:                                 Patrick Lynch, MD
   Marc Fine, MD                                                                  Hepatologists:                              Lynda Brady, MD
   Hymie Kavin, MD                         Gastroenterologists:                      Stanley Martin Cohen, MD                 Ranjana Gokhale, MD
   Mani Mahdavian, MD                         Terrence A. Barrett, MD                Helen Te, MD                             Barbara S. Kirschner, MD
   Ken O’Riordan, MD                          Alan L. Buchman, MD                 Gastroenterologist:                     Pediatric Gastroenterologists:
   Dean Silas, MD                             M. Rosario Ferreira, MD                Lynda Brady, MD                          Stefano Guandalini, MD
                                              Ikuo Hirano, MD                                                                 Peneet Gupta, MD
Gastroenterologists:                          Colin W. Howden, MD                 University of Illinois-Chicago
   Juan Engel, MD                             Michael P. Jones, MD                Medical Center
                                              Peter J. Kahrilas, MD                                                       Please note: This reference list
Loyola University Medical Center                                                  840 S. Wood Street, MC 787
                                                                                                                          is for informational purposes
2160 S. 1st Avenue                            John E. Pandolfino, MD              Chicago, IL 60612-7323
                                                                                                                          only. The American Liver
Maywood, IL 60153                             Alasadi Rameeez, MD                 312.996.3800                            Foundation (ALF) does not,
708.216.0364                                  Christian G. Stevoff, MD                                                    under any circumstance,
                                                                                  Hepatologists:
                                              Arvydas Vanagunas, MD                                                       recommend particular medical
Hepatologists:                                                                       Tom Layden, MD
                                                                                                                          professionals or treatments for
   Khondaker Islam, MD                     Rush-Presbyterian-St. Luke’s              Giuliano Testa, MD
                                                                                                                          specific individuals. The ALF
   Julie Roth, MD                          Medical Center                            Thelma Wiley, MD
                                                                                                                          does not engage in the practice
   David Van Thiel, MD                     1725 W. Harrison, Suite 306                                                    of medicine. The ALF Illinois
                                           Chicago, IL 60612                                                              Chapter makes every attempt to
Gastroenterologists:                                                              FOR PEDIATRIC MATTERS:                  continually update this reference
   Rani Chintam, MD                        312.942.8910
                                                                                  Children’s Memorial Hospital            sheet. Please know it is not
   Michael Klamut, MD                      Hepatologists:                         2300 Children’s Plaza, Box 57           inclusive of all Illinois’
   Jack Leya, MD                              Scott J. Cotler, MD                 Chicago, IL 60614                       hepatologists and/or
   Sohrab Mobarhan, MD                        Donald Jensen, MD*                  773.880.4354                            gastroenterologists.
   Thomas Schnell, MD                         Howard Rosenblate, MD
   Nikunj Shah, MD, FACP                      Karen Sable, MD**                   Pediatric Hepatologists:
                                                                                      Estella Alonso, MD



                 Make A Difference…                                                  Become A Member
One in 10 Americans is affected with liver disease. Become a member of the ALF and you will receive important information including
National and Chapter newsletters, research updates, and meeting notices. You'll also be a part of a nationwide force of patients, healthcare
leaders, scientists, and other concerned people who can speak as a unified voice. Your tax deductible membership will help fund research,
education programs, and organ donation awareness activities. Please return this form to the Chapter Office.


 Name: ___________________________________________________________________Email: ___________________________________________________

 Address: _________________________________________________________ City:________________________________ State: _____ Zip: _____________

 Home Phone: ______________________________ Work Phone: ______________________________ Fax: ________________________________________

 I would like to volunteer with:        s support groups         s helping at the office    s community education          s fund raising
 Enclosed is my annual fee of $25:         s check      s Visa       s MasterCard      s AMEX
                                           Credit Card #______________________________________________ Exp. Date _____________________________


 Name as it appears on card (please print): ____________________________________________________________________________________________

 Signature __________________________________________________________________________________________________________________________
                                    Thanks for joining us in the fight against liver disease and raising organ donor awareness!

                                                                               14
Clinical TRIALS
Northwestern Memorial Hospital              • Pravastatin for elevated cholesterol        • Peg-Intron™ + Ribavirin
(Call 312.469.4932 for more                   in people with liver disease                  Peg-Intron™ is the pegylated version
information)                                  Many people with liver disease also           of Schering’s Intron-A. Because it is
                                              have elevated cholesterol. Often,             pegylated the injections are just once
Hepatitis C                                   physicians may be hesitant to                 per week. This drug is already FDA
• Pegylated Interferon and Ribavirin          prescribe the drugs which can help            approved. The study is looking at
  for patients who have never been            reduce cholesterol for fear of                whether it is better to base the dose
  treated.                                    stressing the liver. This study will          of Ribavirin on a person’s weight or
• Pegylated Interferon and Ribavirin          evaluate the use of Pravastatin in            if the standard dose is appropriate for
  for patients who did not respond to         those people known to have liver              everyone. The study remains open
  standard Interferon and Ribavirin           disease. Dietary consultations will           to people with genotype 2 but the
                                              also be included.                             genotype 1 group is already full.
Liver Failure
                                            • Oral agent for Hepatitis C
• Patients will be treated with a drug
                                              A study evaluating a potential new          University of Chicago Hospitals
  or placebo for a period of 72 hours as
                                              drug for hepatitis C infection is           (Contact Katie Wherity at 773.702.4477)
  a part of the NIH (National Institute
                                              expected to begin in May. The drug
  of Health) sponsored US Acute Liver
                                              is taken orally and is expected to          Hepatitis C
  Failure randomized controlled
                                              have minimal side effects. Two              • Peg-Intron plus Ribavirin for
  double-blind study. This study will
                                              studies will be done, one for those           hepatitis C patients who have not
  examine the potential benefit of N-
                                              who have never received treatment             responded to standard Rebetron
  acetyleysteine in fulminant hepatitic
                                              and the other for those who were              therapy. Inclusion criteria: >18
  failure. Etiology is non-
                                              treated unsuccessfully. Only those            years of age, HCV RNA positive after
  acetaminophen related.
                                              with genotype 1 and mild to                   at least 12 weeks of Rebetron, liver
• The mental state of patients with           moderate liver damage will be                 biopsy within 3 years.
  cirrhosis and deep hepatic                  enrolled in either study.
  encephalopathy will be evaluated                                                        • A Pegylated Interferon plus
  through the US study examining the        • Screening protocol for upcoming               Thymosin for compensated cirrhotic
  effects of treatment with MARS              Levovirin studies                             patients who are non-responders to
  (albumin dialysis). The study is a          Levovirin, a new form of Ribavirin            prior Interferon or Interferon plus
  randomized controlled evaluation of         expected to have fewer side effects,          Ribavirin treatment. The inclusion
  five days of MARS vs. standard              will be evaluated in upcoming                 criteria includes non-responders to
  therapy.                                    clinical trials over the course of the        prior Interferon or Rebetron therapy,
                                              year. Participants will first enroll in a     childs pugh less than or equal to 6
University of Illinois at Chicago             screening protocol which will help            and abnormal ALT.
(Contact Mary Kozlowski at                    make sure they will qualify for the
312.413.5694)                                 Levovirin studies. Participants will        Hepatitis B
                                              receive either Pegasys™ + Levovorin         • A Lamivudine-Resistant Hepatitis B
• African American, Hispanic and              or Pegasys™ + Ribavirin. All                  study. Inclusion criteria includes
  Caucasian patients who are genotype         genotypes may enroll.                         chronic HBV for more than 6
  1 and have never been treated for                                                         months, at least 18 years of age, on
  hepatitis C are eligible to participate   • Pegasys™ + Ribavirin in HIV + HCV             Lamivudine, abnormal ALT.
  in research to study racial differences     The purpose of the study is to learn
  in response to treatment. Treatment         more about the response to                  NASH
  includes the use of Pegylated               Pegasys™ + Ribavirin in people who          • A pilot study to determine the safety
  Interferon with/without Ribavirin for       have HIV infection and hepatitis C            and efficacy of Pioglitazone
  the duration of one year.                   infection as compared to people who           Hydrochloride (Actos) therapy in
                                              have only hepatitis C infection. This         patients with non-alcoholic
Rush-Presbyterian-St. Luke’s                  study is open to African Americans            steatohepatitis. The inclusion
Medical Center                                who have not received Interferon              criteria includes body mass index
(Please leave a message on the Rush study     treatment. Enrollment is open in              greater than 30, 18 years of age and
line at 312.563.3960 and a nurse will         both the hepatitis C only group and           a liver biopsy within the last 12
return your call.)                            the hepatitis C and HIV group.                months showing steatohepatitis.
                                                               15
              Board of Directors                                     Give a Liver. Save a Life.
                 David A. Sherman, PRESIDENT
             Catheleen Kahn Healey, VICE PRESIDENT
                   Chari Aweidah, TREASURER
                    Patty Devine, SECRETARY

                           Directors
       Hon. Jesse White             J. Michael Millis, MD
      Andres T. Blei, MD             Audrey I. Silver, RN
       David Cronin, MD           Carolyn Smeltzer, RN, EdD
        Thomas G. Estey                 Frank J. Uvena
       Dennis F. Gleason           Charles R. Walgreen, III
    Donald M. Jensen, MD                Daniel E. Weil
Cynthia Helphingstine, PhD, MBA       Elizabeth M. Weil
    Thomas J. Layden, MD           Peter F. Whitington, MD
        Doug Lubelchek                   Hank Zemola
      Michael B. Manuel
                                                                LIVER INFORMATION FOR EVERYONE
        Medical Advisory Committee
  David Cronin, MD - Chair             Nancy Leone, RN
   UNIVERSITY OF CHICAGO               LOYOLA UNIVERSITY
          HOSPITALS                 J. Michael Millis, MD
       John Brems, MD               UNIVERSITY OF CHICAGO
       LOYOLA UNIVERSITY                  HOSPITALS                                    MISSION STATEMENT
       Scott Cotler, MD            Kathleen Shortridge, RN         The American Liver Foundation (ALF) is a national voluntary
  RUSH-PRESBYTERIAN-ST. LUKE’S      UNIVERSITY OF CHICAGO
                                          HOSPITALS                    health organization dedicated to preventing, treating,
    Amanda DeVoss, PA-C
  RUSH-PRESBYTERIAN-ST. LUKE’S       Giuliano Testa, MD                      and curing hepatitis and other liver diseases
     Steven Flamm, MD               UNIVERSITY OF ILLINOIS AT
                                           CHICAGO
                                                                              through research, education and advocacy.
   NORTHWESTERN MEMORIAL
     Daniel Ganger, MD               David Van Thiel, MD
    DUPAGE MEDICAL GROUP              LOYOLA UNIVERSITY

     Donna Goldman, MD               Thelma Wiley, MD
                                    UNIVERSITY OF ILLINOIS AT   The printing of LIFE is made possible
         NORTHWEST
     GASTROENTEROLOGISTS                   CHICAGO              through a grant from Roche
     Mary Harless, RN               James Williams, MD
                                                                Pharmaceuticals. The ALF Illinois Chapter
   NORTHWESTERN MEMORIAL            UNIVERSITY OF CHICAGO
                                          HOSPITALS             would like to express gratitude for their
     Donald Jensen, MD
  RUSH-PRESBYTERIAN-ST. LUKE’S      Rockford J. Yapp, MD        assistance in carrying out our mission.
                                  ADVOCATE GOOD SAMARITAN
     Alan Koffron, MD
   NORTHWESTERN MEMORIAL                                        Printed by The Print Factory
     Mary Kozlowski, RN                                         Graphic Design by The Gammon Group, Inc.
    UNIVERSITY OF ILLINOIS AT
           CHICAGO                                              Special thanks to Gift of Hope for making our new design a reality.

               Illinois Chapter Staff
          Jacqueline A. Dominguez, CHAPTER DIRECTOR
        Diana Cázares, COMMUNITY EVENTS COORDINATOR
  Linda S. Ruhe, M.A., EDUCATION/SUPPORT GROUP COORDINATOR
      Lanie H. Mueller, PROGRAM/ADMINISTRATIVE ASSISTANT



                                                                                                                           Non-Profit
                                                                                                                         Organization
                                                                                                                          U.S. Postage
                                                                                                                              PAID
       27 East Monroe Street, Suite 700A
                                                                                                                         American Liver
       Chicago, Illinois 60603
                                                                                                                          Foundation
       312.377.9030

				
DOCUMENT INFO
Shared By:
Categories:
Tags:
Stats:
views:24
posted:10/2/2011
language:English
pages:16