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updated 11/8/03

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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 in 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 each dancer after their solo performances, especially the final performer; who put on a traditional dance augmented with 10 or so hoola hoops that he arrayed in 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 adversity.

“ 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 said.
He talked about his accomplishments both in high school and college, as well as his work with the high school he helped build, showing 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 that money.”

Schuldiner also encouraged parents of children with bleeding disorders to let their offspring be kids first and children with hemophilia second. He 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.”

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NHF URGES ADVOCACY AT LOCAL, STATE, NATIONAL LEVEL

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 of 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 NHF.

“ 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 needs.”

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 handle various tasks.

“ 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 on.”

Metz said that restrictions to access to care, restrictions to getting clotting factor products and lifetime caps on insurance benefits 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 said.

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.

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SPORTING EVENT ENCOURAGES KIDS WITH BLEEDING DISORDERS TO LEAD ACTIVE LIVES

Perry (left) and Corey Parker with
Junior National Golf Champion
Vohn Dumdumaya.
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 in friendly 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 who have 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 after participating 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 golf clubs 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 has been rewarding. “I 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.”

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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 in Chicago.

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 a database.

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The codes above each session indicate that session’s primary audience.

 A 
 C 
 CS 
 CSO 
 MD 
 P 

 P 
 N 
 SW 
 NF 

= All
= Consumers
= Chapter Staff
= Chapter Staff Organization
= Physicians
= All Providers (nurses, physicians, physical therapists, social workers)
= Physical Therapists
= Nurses
= 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)
 A 
7:00am-9:00am
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 managing viral risk to managing optimal patient care.
Sponsored by Baxter Healthcare Corporation

INDUSTRY-SPONSORED SYMPOSIUM II
The Road to "Recovery": Choices for Hemophilia B
 A 
7:00am-9:00am
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

MASAC
 A 

9:00am-5:00pm
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 
9:00am-10:00am
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
 PT 
9:00am-11:00am
Speakers: Sharon Funk, PT, Sue Geraghty, RN
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 will follow.
Sponsored by American Red Cross

ADDICTIONS
 SW 
9:00am-11:00am
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
)
 C   NF 
9:00am-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

CDC/UDC CHECKOFF
 PT 
9:30am-5:30pm
This special checkoff session is designed for physical therapists who wish to complete training for the CDC Universal Data Collection (UDC) Musculoskeletal Measurements.

CSO ROUNDTABLES
 CSO 
10:00am-11:00am
Small discussion groups will deal with a variety of timely issues of importance to NHF chapter leadership.

OBESITY
 SW   PT   RN 
11:30am-1:30pm
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
Treatment
Exercise and physical fitness
Prevention of this epidemic
Sponsored by NuFactor

NEW OPTIONS FOR PROPHYLAXIS
 RN   C   NF 
11:30am-1:30pm
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
 A   NF 
11:30am-1:30pm
Speakers: Paul Haas, PhD; Jordan Lurie, MD; Shannon Penberthy
Come hear the latest about advocacy activities in Washington, DC, and across the nation at this session focused on:
Insurance coverage
Reimbursement
Blood safety

ASK THE EXPERTS: CARRIERS
 C   NF 
11:30am-12:30pm
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
 P 
12:00pm-1:00pm
Speakers: Linda Belling, MS, RN, CRRN; Lynn Obstein, LSW
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 discussion.

ASK THE EXPERT: GENE THERAPY
 C   NF 
12:00pm-1:00pm
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
 C   A   NF 
12:30pm-1:30pm
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
 A 
12:30 pm-1:30pm
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.

AWARDS LUNCHEON
 A 
1:30pm-3:30pm
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
 SW   RN   PT 
3:30pm-5:30pm
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 responsibility.

NURSING CASE STUDIES: INHIBITORS
 RN 
3:30pm-5:30pm
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, RN, BSN

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
 C   PT   NF 
3:30pm-5:30pm
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 
5:30pm-6:30pm
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
 RN   PT 
5:30pm-6:30pm
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.

PERSONALITY DISORDERS
 SW 
5:30pm-6:30pm
Speaker: Alice Parkinson, MS, APRN-PP
This session will focus on:
Developmental events leading to disorders of the self
Traits that characterize DSM personality disorders
Origins of those traits
Adaptation
Professional responses to facilitate adaptation

Orthotics and Adaptive Devices
 PT   RN 
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 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 the use of crutches, a cane or a walker.

FINAL NIGHT EVENT--OLYMPIC CELEBRATION
 A 
7:00pm-11:00pm
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.


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