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NHF OPENING CEREMONY DISPLAYS CULTURE
AND A WILL TO FIGHT
|The packed crowd at the 55th NHF Annual
Meeting opening ceremony was treated to a passionate address from
keynote speaker Ben Schuldiner, as well as the humor of meeting
co-chair Ruth Mulvany and an exciting performance by the same troop of Native American
dancers that performed at the 2002 Winter Olympics.
It is hard to pin down what was more dazzling — the Native American
dancers or keynote speaker Ben Schuldiner. Either way, the crowd was a winner
at NHF’s 55th Annual Meeting opening ceremony.
Convention Co-chairs Ruth Mulvany and Calvin Price opened the ceremony
by welcoming the standing-room only crowd. Then came the dancers, dressed
ceremonial garb and moving to the accompanying sounds of native drumbeats.
This veteran group showed the crowd why it was chosen to perform at the
2002 Winter Olympics in Salt Lake City. The capacity crowd cheered for
after their solo performances, especially the final performer; who put
on a traditional dance augmented with 10 or so hoola hoops that he arrayed
various forms throughout his dance.
NHF Acting President Jordan Lurie, MD, addressed the crowd next, speaking
to the gathered members about the need for unity with regard to the advocacy
efforts the foundation is currently making.
Our greatest strength comes from our ability to come together and speak with
one strong voice,” Lurie said.
Lurie said that NHF is about to conclude an agreement with the National
Heart, Lung and Blood Institute (NHLBI) to augment the “It’s Time for
a Cure” funds raised by NHF for research for a cure.
The ceremony’s highlight came next when Mulvany introduced keynote
speaker Ben Schuldiner, a 26-year-old Harvard University graduate and founder
and principal of the High School for Public Service in New York City.
Schuldiner, who has hemophilia, gave an energizing talk about the
role of his disease in shaping his will to succeed and overcome
We shall be like the phoenix,” Schuldiner said. “Out of the ashes
of yesterday, rises the hope of tomorrow.”
Schuldiner said he came to the NHF Annual Meeting to
celebrate life and to thank those that had helped him succeed.“
We are here and we will survive,” Schuldiner said. “I was asked
to speak to you because of the work I have done in spite of hemophilia. It
may in fact be because of it that I have been successful.”
Hemophilia is not a reason to shrink from the world, Schuldiner
He talked about his accomplishments both in high school
and college, as well as his work with the high school he
a pattern of success
born from risk-taking.
That never-say-die attitude was manufactured with the
help of his disease, Schuldiner said.“
It helped me take on the world,” Schuldiner said. “Think of all
of the work that goes into keeping me alive. It cost $150,000 from my insurance
company to keep me alive this year.
Where does that money come from? It comes from people.”
Schuldiner said he figured out that it cost roughly $3.75 million
of someone else’s money to keep him alive over the course of his 26 years on Earth.
For that, he said, he is grateful and feels a need to make good on that investment.
I had better be worth it,” Schuldiner said, as the crowd responded
with laughter. “Just think, the city could have built a school with
Schuldiner also encouraged parents of children
with bleeding disorders to let their offspring
first and children
said that his parents’ willingness to allow him to play sports and “be
one of the boys,” gave him the courage to be a success and pay the
people, known and unknown, who have helped keep him alive.
Society has given me their time, their money and their blood,” Schuldiner
said. “I must do something to prove that it was worth it for society
to provide me with so much.”
NHF URGES ADVOCACY AT LOCAL, STATE,
Advocating an overall position is of paramount importance for any group seeking
to ensure the survival of its membership.
That message was expressed at a meeting yesterday and will be voiced again
today at the “NHF Advocacy Update” from 11:30 a.m. to 1:30 p.m.
in the Audubon Room.
According to Acting NHF President Jordan Lurie, MD, insurance coverage
and reimbursement rates for providers are two huge issues that the members
the NHF need to be aware of.
Lurie said that revamping the health care insurance system in the United
States is one of his main focuses during his tenure as president of the
We have a system in this country where by individuals have limited choices
in the level and amount of insurance that they have access to based on their
state of residency and their employer,” Lurie said. “Due to the
rising costs of health care and the limited resources at our disposal, our
system is likely to implode.
The NHF needs to be at the table to discuss ways to fix the system. We need
to be sure that all individuals with bleeding disorders, no matter their
income level or their state of residency, have access to both high quality
health care and a choice of products and services which best serve their
NHF Board Member Richard Metz, MD, said that advocacy on the state
level is important as state budget crises across all 50 states
have politicians “sharpening
their knives” in preparation to cut out government-sponsored medical
and social programs that NHF members depend on. Dr. Metz, along with Shannon
Pemberthy, of MARC Associates, NHF’s lobbying and government affairs
firm, gave a talk entitled, “State-based Advocacy,” on Friday
in the Savoy room, urging NHF members to get active on a local basis and
call attention to their cause on state level.
We are talking about the budget crisis in various states and how the threat
is now in terms of cuts in state health programs,” Metz said. “We
also are pointing out how that directly impacts the population. Our members
need to know how we are going to approach the issue and what they can do.”
Metz said that an NHF State Advocacy Task Force was formed in
the spring and that a proposal was crafted to discern who will
We hired a consulting company and they will do both the regulatory and legislative
tracking in all 50 states,” Metz said. “They will also give us
consulting advice and help us prioritize the issues that we need to focus
Metz said that restrictions to access to care, restrictions
to getting clotting factor products and lifetime caps on
are the big hot button
issues for the task force right now.
We are trying to do whatever we can to help our state-run programs keep running,” Metz
Today’s talk will focus on the latest advocacy activities going on
in Washington D.C., as well as across the rest of the nation. Insurance coverage,
reimbursement issues and blood safety will the main focus of the discussion.
SPORTING EVENT ENCOURAGES KIDS
WITH BLEEDING DISORDERS TO LEAD ACTIVE LIVES
Perry (left) and Corey Parker with
Junior National Golf Champion
Perry (left) and Corey Parker with Junior
National Baseball Champion Ivan Sada.
Helping children and adolescents with bleeding disorders understand that
physical activity can be fun and a part of their lives was recently illustrated
during a series of regional golf and baseball competitions held throughout
the country. A joint effort between NHF and Aventis Behring, these events
culminated with the Junior Championship in Golf and Baseball.
Vice President and General Manager of Aventis Behring North America, Joe
Pugliese was on hand at the championship. “The competitions, which
are natural outgrowth of our very widely received Getting’ in the Game
program, shows kids with hemophilia that there is a lot that they can do,” he
said. “All the parents and kids had a great time. It exceeded my expectations.
Nearly 150 children vied for top honors in Dallas, Minneapolis, Portland
and Tampa. Two regional tournament winners — one for baseball and one
for golf — went on to Newport Beach, CA, where they competed with area
children in a national championship.
Open to all children with bleeding disorders between the ages of 7 and
18, the program allows kids to get physically active and to participate
competition. During the morning of each regional event, the participants
attended a workshop, where they learned how to safely exercise, got
to know other kids with bleeding disorders and met two athlete brothers
hemophilia — Corey and Perry Parker, a former baseball player with
the Detroit Tigers Minor League and a Professional Golf Association player
who has won 25 professional championships, respectively. The Parker brothers,
who both have mild hemophilia A (factor VIII deficiency) led baseball and
golf clinics, where a child from each sport in each region was selected to
win a free trip, along with up to two accompanying adults, to compete in
the championship event.
Corey says the events teach children about achieving a healthy lifestyle. “Thanks
to this educational and fun experience, the kids learned the importance of
exercise, stretching, treating bleeds and staying healthy,” said Corey,
who is a professional baseball hitting instruction in southern California.
The Junior National Baseball Champion, Ivan Sada, 17, of Riverview,
FL, who has severe hemophilia, has made some plans for his future
in the event. “I want to stay and shape, and when I get older be like
Cory and Perry,” said Ivan.
As winner of last year’s tournament, Vohn Dumdumaya, returned to defend
his title. Now a two-time winner, Vohn, 11, of Fairfield, CA,, he says he
wants to be active and healthy. “I wanted to play, but it was an honor
to win. Plus, I beat three 17-year-olds, said Vohn, who has severe hemophilia.
Ivan and Vohn each received a trip for three to the NHF Annual
Meeting. Ivan also won a bat, glove, helmet and a bat bag,
and Vohn received
and a golf bag.
Giving back to the community has been a longtime effort for
both of the Parkers, and Perry says that sharing his own experiences
grew up thinking that I was the only kid with hemophilia. The very emotional
event allows us to bring kids together to discuss issues and root for one
another,” said Perry. “Seeing the camaraderie was rewarding.”
HTRS MAKING STRIDES
The Hemophilia and Thrombosis Research Society (HTRS) is not yet very old,
but it is making headway while its membership and research grow simultaneously.
Roshni Kulkarni, MD, an HTRS board member and a member of the NHF Medical and
Scientific Advisory Committee (MASAC), gave an overview of the program’s
history and charted a path for its growth during the “New HTRS at NHF session
on Friday afternoon
Dr. Kulkarni stood in for HTRS President Tom Abshire, MD, who was detained
Dr. Kulkarni said that while the HTRS was founded in the early 1990s and
incorporated in 1994, it already has 197 members. The major focus of
the HTRS is promoting
collaborative research among scientists and physicians, as well as mentoring
junior faculty in this area of study.
Dr. Kulkarni said that the amount of research performed by the HTRS is
beginning to grow. “
We have done 11 research protocols, a number of abstracts and have put
together one National Institutes of Health grant submission,” Dr.
Kulkarni said. “We
also have one clinical trial underway that we are very excited about.”
From here, Dr. Kulkarni said, the HTRS hopes to build up a clinical research
network, initiate two clinical trials, garner increased funding and develop
|The codes above each session indicate
that session’s primary audience.
= Chapter Staff
= Chapter Staff Organization
= All Providers (nurses, physicians, physical therapists, social
= Physical Therapists
= Social Workers
= New Families
INDUSTRY-SPONSORED SYMPOSIUM I
The latest advancement in hemophilia A therapy: The first and only plasma/albumin-free recombinant antihemophilic FVIII: ADVATE (rAHF-PFM)
Speakers: Roshni Kulkarni, MD; Jennifer Maahs, MSN, PNP; Stephen Pipe, MD; Wing-Yen Wong, MD
Come learn what clinician thought-leaders
have to say about Advate (rAHF-PFM), the first and only factor
VIII therapy processed without the addition of plasma and albumin.
These experts will explain the importance of eliminating the risk
of infections caused by viruses and prions carried in these protein
additives. Hear from a clinical trial participant about his experience
using Advate rAHF-PFM. With the availability of this therapy, the
hemophilia medical community can now shift their attention from
risk to managing optimal patient care.
Sponsored by Baxter Healthcare Corporation
INDUSTRY-SPONSORED SYMPOSIUM II
The Road to "Recovery": Choices for Hemophilia B
Speaker: Jorge di Paola, MD
This program will provide an overview of and discuss the various treatment options available for hemophilia B.
Sponsored by Aventis Behring
Regular meeting of the Medical and Scientific
Advisory Council (MASAC)
of the National Hemophilia Foundation. Open to all.
INDUSTRY-OPERATED COMMUNITY EVENTS: SHARE YOUR VIEWS
CS RN SW
Moderator: Michael Rosenthal
Join chapter staff, nurses, social workers, consumers and leaders of the bleeding disorders community in a discussion of best practices. This session will explore how companies build relationships with consumers at industry-sponsored events.
ORTHOPEDIC PROCEDURES AND SURGERIES
Speakers: Sharon Funk, PT, Sue Geraghty,
An experienced nurse and physical therapist will review common orthopedic
procedures and surgeries that are often recommended for people with
bleeding disorders. The procedures and surgeries will be discussed
along with the pros and cons of each, post-operative rehabilitation
and outcomes that may be expected. A brief question and answer session
Sponsored by American Red Cross
Speaker: Dana Appling, LLSW
This session focuses on the dynamics of addiction from a multidimensional
perspective--social and emotional, as well as various theoretical/psychological--perspectives.
PARENTING SKILLS: HOW CHILDREN UNDERSTAND HEMOPHILIA
(Includes First Step from 10:00am-11:00am)
Moderator: Debbi Adamkin
Speaker: Laurie Kelley
This session to discuss how children understand their world
and bleeding disorders in particular as they develop and mature
in thinking. This will cover the years from preschool age to adolescence and will describe the First Step Program of NHF and CDC.
Sponsored by Wyeth
This special checkoff session is designed for physical therapists
who wish to complete training for the CDC Universal Data Collection
(UDC) Musculoskeletal Measurements.
Small discussion groups will deal with a variety of timely issues of importance to NHF chapter leadership.
Moderator: Jeffrey Slaby, BSN
Speakers: Edward Kuebler, LMSW-ACP; Julie
Musick, MS, PT; Peggy Crum
The catastrophic increase in obesity in all population segments
in the US (New York Times, May 14, 2003) does not exempt persons
with bleeding disorders. This session will explore:
• Psychosocial issues
• Multiple factors associated
with the cause of obesity
• Exercise and physical fitness
• Prevention of this epidemic
Sponsored by NuFactor
NEW OPTIONS FOR PROPHYLAXIS
Moderator: Susan Geraghty, RN
Speaker: Jennifer Maahs, MSN, PNP;
Joan Osip, RN, MS; Jennifer Cironi, APRN
This session will describe techniques for teaching families peripheral
IV (PIV) and strategies for ensuring successful transition from
ports to PIV. It will discuss the incidence of thrombosis in patients
with central venous access devices.
Sponsored by Wyeth
NHF ADVOCACY UPDATE
Speakers: Paul Haas, PhD; Jordan Lurie, MD;
Come hear the latest about advocacy activities in Washington, DC,
and across the nation at this session focused on:
• Insurance coverage
• Blood safety
ASK THE EXPERTS: CARRIERS
Speakers: Andra James, MD, MPH; Andrea
Lukes, MD, MHSc
Women who are carriers of bleeding disorders will have the opportunity
to address questions to two noted obstetricians/ gynecologists who
direct the Women’s Hemostasis and Thrombosis Clinic
at Duke University. After a brief introduction by the physicians,
the audience’s questions will guide and create the session.
TRANSITIONING: USE OF GUIDELINES
Speakers: Linda Belling, MS, RN, CRRN; Lynn
Transitioning patients who have bleeding disorders from pediatric
to adult care has been a constant topic of concern. This session
examines the newly developed, comprehensive guidelines of the NHF
Social Work Working Group, which describe successful transitioning.
How to adapt the guidelines for different clinical settings using
available staff will be an important focus of the presentation and
ASK THE EXPERT: GENE THERAPY
Speaker: Glenn Pierce, PhD, MD
Hopeful options for curing or significantly ameliorating treatment
of bleeding disorders will be the focus of this session. It will
review preclinical studies using gene transfer and gene
transfer clinical trials. Future research directions
in this area will be highlighted and answer your questions will be answered.
ALTERNATIVE AND COMPLEMENTARY THERAPIES
Moderator: Debbi Adamkin
Speaker: Bradley Lewis, MD
Increasingly, members of the bleeding disorders community are seeking
information about herbal and vitamin therapies. Both healthcare
providers and patients need to be informed about the risks and benefits
associated with use of these agents. This session will provide information
about specific complementary therapies.
EVALUATING EMERGING THREATS TO THE BLOOD SUPPLY
Speaker: Sara Critchley, RN, MS, of CDC; Paul Haas, PhD, of NHF; Dorothy Scott, an FDA representative
Despite advances in blood screening and viral inactivation of plasma products, the bleeding disorders community continues to be plagued with worries about the safety of the nation's blood supply and blood-based products. This session, with representatives from Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA) and NHF will provide the framework for a dialogue on responding to continuing potential threats to blood safety such as Creutzfeldt-Jakob disease, West Nile virus, SARS and smallpox.
Enjoy lunch while NHF recognizes remarkable and distinguished individuals
and programs in the bleeding disorders community. Volunteer and
professional awards will be presented, including Physician of the
Year, Humanitarian of the Year, Outstanding Chapter Leadership,
Social Worker of the Year, Nurse of the Year and Physical Therapist
of the Year, as well as Awards of Distinction in Programs--honoring the highest caliber of prevention education and health communications projects--will be presented to chapters and associations. Do the 5! Game winners will be announced following the ceremony.
Ask NHF Staff for Awards of Distinction and Excellence Nominations
packets for 2004. You have to be in it to win it!
Sponsored by Wyeth
LIVING WITH CHRONIC PAIN
Speakers: Kevin Schoenberger, PT; Kathryn
Smolinski, MSW; Michelle Witkop, APRN, BC
This session will focus on the difference between acute and chronic
pain, the emotional component of chronic pain and its management
issues. Helping social workers appreciate their unique role in helping
to advocate better pain management for individual clients and teaching clients valuable skills to help manage their pain, will
be central to the presentation. The session will explore the benefits
of cognitive-behavioral techniques, the significant
role caregivers play in managing pain and how they deal with this
NURSING CASE STUDIES: INHIBITORS
Moderator: Mary Kay Thrower, RN
Speakers: Judy Bagato, Sue Geraghty, RN; Rose Giardine; Vicky Hanneman,
RN; Madeline Heffner, RN, BSN; Ann Kriebel, MSN, CRNP; Ellen White,
Nurses from across the country will present case studies to stimulate
discussion and provide useful information regarding patients that
have developed high titre inhibitors and/or acquired inhibitors.
Sponsored by Aventis Behring
TOTAL FITNESS: SPORTS AND NUTRITION
Speakers: Angela Forsyth, MS, PT; Peggy Crum
This session will discuss:
• Proper exercise strategies
• Making exercise a habit
• Conducting a fitness evaluation
• Special considerations for
children with bleeding disorders
• Nutrition for fitness, peak
performance, hydration and all-around good health.
NATIONAL PREVENTION PROGRAM REPORT-OUT
C RN PT SW NF
Moderator: Ann Marie Nazzaro, PhD; Sonia Roger
Women who are carriers of bleeding disorders will have the opportunity to address questions to two noted obstetricians/ gynecologists who direct the Women’s Hemostasis and Thrombosis Clinic at Duke University. After a brief introduction by the physicians, the audience’s questions will guide and create the session.
ORTHOTICS AND ADAPTIVE DEVICES
Moderator: Jim Munn, RN, MS
Speakers: Nicole Hroma, PT; Heidi Lane, PT; Davis McFarland-Smith, MSPT
The focus of this session will be:
•Post-injury bracing: options and special considerations
• Background of a new orthotics study including methodology and outcome-based results
Participants will learn when and when not to brace, how to properly fit an individual and how to teach the individual to use crutches, canes or walkers.
Speaker: Alice Parkinson, MS, APRN-PP
This session will focus on:
• Developmental events leading
to disorders of the self
• Traits that characterize DSM
• Origins of those traits
• Professional responses to
Orthotics and Adaptive Devices
5:30 pm-6:30 pm
Moderator: Jim Munn, RN, MS
Speakers: David McFarland Smith, MSPT; Nicole Hroma, PT; Heidi Lane, PT
The focus of the session will be:
• Post injury bracing: options and special
• Background of a new orthotics
study including methodology and outcome-based results
Participants will learn when and when not to brace, how to properly fit an individual
and how to teach the individual the use of crutches, a cane or a walker.
FINAL NIGHT EVENT--OLYMPIC CELEBRATION
The party comes to live with a taste of the Winter Olympics, including a trampoline performance by the Flying Aces, "virtual" winter sports games, a live dance band and "taste of the world" light food fare and beverages. A night to remember for all.
Sponsored by Baxter Healthcare Corporation
Sunday, November 9, 2003
Board of Directors Meeting
7:00 am-1:00 pm. Open to All.