Welcome to Texas from the Lone Star Chapter (top)
By Debbie De La Riva, executive director

On behalf of the Lone Star Chapter of NHF, I would like to welcome each and every one of you to the 56th Annual Meeting in Dallas, Texas . Ironically, it was five years ago when I brought my son to this very same hotel for his first NHF meeting. It seems like only yesterday, but so much has happened since then.

As I reflect back on my journey with hemophilia, I become aware of strife and victories inherent with living with this condition. The first bleeds, mastering infusions, decisions about which sports to play, helping him understand what hemophilia is and how he can take care of himself. The list goes on, but it is nothing foreign to readers of this newspaper.

The one constant throughout all of these years has been NHF. Many years have passed and I have received a great deal more than just information from NHF.

I have formed long-lasting, meaningful relationships in the community and developed a support network which helps me as a chapter leader and as a person. I am very grateful for NHF and all of the opportunities that this organization has given to me. Most of all, I look forward every year to see old friends and making new ones. I encourage everyone to reach out to others while at the conference. The possibilities are endless if we are bond together and moving in the same direction.

Internet Station: Check E-mail, Visit New “Family Pages” (top)

Those who need to stay in touch with their lives back home can visit NHF’s two Internet Stations where they can check their e-mail and see some of the new things NHF is doing on its Web site, hemophilia.org. One new feature is the It’s Time for a Cure Family Pages. Now visitors can “Click for a Cure” by building their own personal fundraising Web page. In four simple steps, anyone can create a fundraising Web page, complete with photographs and personal stories, to e-mail to all friends and family who will help reach a chosen fundraising goal. These Web pages are a fun, interactive and effective fundraising tool, allowing people to reach out to everyone they know — whether they live in Tulsa or Tokyo! Several families have already started their own pages.

Many other features have recently been added to hemophilia.org, including new discussion groups.

One Internet Station is located outside the Exhibit Hall on the lower level and the other is in the Reunion Foyer on the lobby level.

Wednesday/Thursday Highlights (top)

Preconference Symposia
Wednesday, 12:00–6:00PM

Industry Symposia
Thursday, 8:00–10:00AM

HTC Staff Meeting
Thursday, 8:00–10:30AM

Medical Preconference:
Toward Consensus on Diagnosis and Management of Women With Bleeding Disorders
Thursday, 12:00–6:00PM

Social Work Preconference: Psychosocial Issues of Von Willebrand Disease
Thursday, 2:00–5:00PM

Physical Therapy Preconference: Functional Biomechanics and Orthotics
Thursday, 2:00–6:00PM

Orientation/Welcome Session
Thursday, 3:00–4:00PM

New Families and Consumer Reception
Thursday, 4:00–5:30PM

Chapter Leadership, Social Worker, Nurses Receptions
Thursday, 5:00–6:00PM

Rap Session for Spanish-Speaking Attendees,
Thursday, 5:30-6:30PM

Opening Reception/Exhibits
Thursday, 6:30–9:30PM

Rise and Shine with Industry-Sponsored Symposia (top)

 No one wants to get out of bed at 7:00 in the morning, but NHF’s
betting it will be worth conference attendees’ while to do so for the seven industry-sponsored symposia to be held in the early hours each day of the meeting. Distinguished speakers and panels of guests will cover topics from understanding new developments in hemophilia treatment to a “march of moms.” Audience members can kill two birds with one stone: have breakfast and learn at the same time.

Thursday

On Thursday the first industry-sponsored symposium is titled “Your Hemophilia Treatment: Understanding Challenges and New Developments.” Sponsored by Bayer and targeted mostly toward consumers, this program will look at the challenges of living with hemophilia as well as the new advances that improve patient care and quality of life. Inhibitor information, adherence and ways to improve quality of life will all be discussed by Karen Wulff, RN, and Nancy Roy, RN.

– 8:00AM-10:00AM

– Room: Landmark BallroomAB

– Breakfast will be served.

Thursday’s other symposium is the provider version of the above program (though anyone is welcome to attend). Also sponsored by Bayer, “Challenges and Innovations in Hemophilia Therapy” will feature Amy Shapiro, MD, and Regina Butler, RN, discussing inhibitors, treatment adherence and ways to improve quality of life

– 8:00AM-10:00AM

– Room: Landmark Ballroom CD

– Breakfast will be served.

Friday

“Living with Hemophilia: Challenges in Day-to-Day Life” is sponsored by Wyeth and targeted to all audiences. The session will focus on common challenges many families face while raising a child with hemophilia—from birth to young adulthood. Neil Cornell, Jr., MD, will provide a brief overview of the symposium, and Joni Osip, RN, will discuss strategies for transitioning care from parent to a young adult patient. Lisa Ryan, a parent, will share her own family’s challenges over the years, and Matt Stinger, a college student with hemophilia, will talk about taking responsibility for his own care.

– 7:00AM-9:00AM

– Room: Reunion Ballroom EF

– Breakfast will be served.

Friday’s second symposium is a “March of Moms: Connections through Experience” is sponsored by ZLB Behring for all audiences. Speakers Doreen Rousseau, Jane Forbes, Rhonda Boni-Burden and a social worker will try to created an interactive forum for parents, specifically mothers, from different areas that can share experiences and everyday challenges related to parenting a child with hemophilia A. It will also provide an environment to connect with others dealing with the same issues and offer advice on how to cope with a chronic illness.

– 7:00AM - 9:00AM

– Room: Reunion Ballroom GH

– Breakfast will be served.

Saturday

“Ensure You Have Choice: Your Right to Access and Innovation” is sponsored by Baxter and targeted toward all audiences. Laureen Kelley, of LA Kelley Communications, Elena Bostick, executive director of the Hemophilia Association of New Jersey, and Marc Salit, PHD, vice president of scientific affairs for the North American region of Baxter Healthcare’s BioScience Division, will focus specifically on healthcare insurance, how the insurance marketplace has changed and what consumers need to do proactively to ensure they have the right insurance for an extended period of time. Health advocacy will also be discussed: Medicaid and other state program updates, legislative tactics and tools and materials needed to have maximum impact. While the first part of the session section focuses on private and public health insurance, this part will focus on working with local chapters to pass legislation that will guarantee access and choice of therapies, providers and treaters. Lastly, innovation in hemophilia therapy, emerging pathogens and advanced category recombinant FVIII therapies will be covered.

– 7:00AM-9:00AM

– Room: Reunion Ballroom EF

– Breakfast will be served.

Thomas Abshire, MD, and a panel of three women/mothers with VWD will speak on “Von Willebrand Disease (VWD): Overview, Treatment and Experience.” This session is supported by an unrestricted educational grant from ZLB Behring and sponsored by the Postgraduate Institute for Medicine for all audiences. The objective of this symposium is to educate patients, their families and professionals about VWD and its appropriate treatment. Topics presented will include an overview of VWD, appropriate and timely treatment of bleeds, prophylaxis and surgery. Additionally, there will be a panel discussion with women who have VWD and who also have children with the same disorder. The panel will discuss some of the topics presented and share their experiences.

This program will provide CE contact hours for nurses.

– 7:00AM-9:00AM

– Room: Landmark Ballroom B

– Breakfast will be served.

– Continuing Education contact hours available for nurses.

The final industry-sponsored symposium, “Pathways to Choice: There Are Options for Hemophilia B” will feature Jorge Di Paola, MD, and is targeted to all audiences. ZLB Behring and the Coalition for Hemophilia B will sponsor the session. The objective of this symposium is to educate patients, parents and their families about the factors that should be considered when reviewing product choices available for the treatment of hemophilia B. It will provide an overview of bleeding disorders and a summary of parameters that should be considered when selecting a treatment.

– 7:00AM-9:00AM

– Room: Reunion Ballroom C

– Breakfast will be served.

New EDs Get “Oriented” to NHF Chapter Life (top)
First-time program prompted by chapter survey results

The results of a survey of NHF chapters and associations completed in early 2004 indicated that a high number of new executive directors are hired each year. Those results, in addition to requests NHF received at the New York Leadership Weekend in June 2004, prompted NHF to host, for the first time, an orientation session for new executive directors on Thursday evening. At the orientation, the NHF education staff will facilitate an interactive discussion and question and answer session surrounding many topics of interest to new executive directors such as the history of hemophilia, the founding of NHF, the evolution of the hemophilia treatment center network and the passing of the Ricky Ray Hemophilia Relief Fund Act.

New EDs and others new to the bleeding disorders community may also want to check out sessions entitled “Everything you Thought You Knew About Bleeding Disorders But Didn’t” (Friday, 11:30), “Ethics/Industry Issues” (Saturday, 9:30) and “State Advocacy Update” (Saturday, 11:30).

Please join NHF in welcoming the following new executive directors to the 56 th Annual Meeting: Nan Buehrer, Southwestern Ohio Hemophilia Foundation; Deb Campeau and Jill McCary, Inland Empire Bleeding Disorders; Lynne Capretto, Northern Ohio Hemophilia Foundation, Inc.; Kristie Cimmino, Texas Central Hemophilia Association, Inc.; Linda Corrente, Hemophilia Foundation of Southern California, Warren Cranford, Tennessee Hemophilia and Bleeding Disorders Foundation; Kathleen Drayton, Hemophilia Foundation of Illinois; Susan Klein, Florida Hemophilia Association; Jim Paist, Hemophilia Foundation of Minnesota and the Dakotas; Francesca Pascucci, Hemophilia Association of San Diego County; Lisa Raterman, Friends and Family of Hemophilia in Greater Cincinnati/Northern Kentucky; Kathleen Roach, Great Lakes Hemophilia Foundation; and Carla Wells, Northwest Ohio Hemophilia Foundation.

Y&A Program Takes Kids “Underwater” (top)

NHF’s Annual Meeting Youth and Adolescent program provides children with hemophilia and their siblings a chance to spend time with others just like them. The 172 children ages 4 to 17 who have enrolled in the Y&A program will be traveling to Dallas’ World Aquarium and The Science Place.

On Friday, visitors will see some of the first salamanders to be bred in captivity, desert pupfish, a large snapping turtle, extinct marine species, electric torpedo rays and walking batfish. The aquarium boasts a collection of 6,000 aquatic animals and participates in a number of national and international conservation research projects. It is also a leader in the breeding of critically endangered Texas species, such as the Texas blind salamander and several desert fishes. The exhibits are augmented by animal feedings and educational talks.

On Saturday, The Science Place, which has been called “one of the most compelling and unique museums in the Southwest United States,” will host NHF’s Y&A’s program. The Science Place has more than 200 hands-on exhibits relating to science, math and technology education for all ages.

Children must be signed in by a parent each morning between 7AM and 8AM.

Women’s Bleeding Disorders Featured at Preconference (top)

On Thursday and Friday, NHF will convene a symposium and roundtable of the leading medical researchers and practitioners in the area of women’s bleeding disorders. The symposium will take place at NHF’s Annual Meeting during its preconference medical program. Drawing together representatives of the Centers for Disease Control and Prevention (CDC), the National Heart, Lung and Blood Institute (NHLBI), American Society of Hematology (ASH), the American College of Obstetricians and Gynecologists (ACOG) and NHF’s Medical and Scientific Advisory Council (MASAC) and Nursing Working Group, the objectives of the preconference symposium are to reach consensus on a research agenda for women’s bleeding disorders; and to hone the messages of NHF’s national awareness campaign—Project Red Flag: real talk about women’s bleeding disorders.

Proceedings from this preconference will be published and broadly distributed in an effort to guide the future steps in research and public education on the issues facing women with bleeding disorders.

Sessions will cover the following topics:

• Prevalence of VWD and Other Bleeding Disorders in Women. CDC Epidemiologist Nicole Dowling, PHD, will discuss one of the largest studies on the increasing prevalence of von Willebrand disease (VWD).

• State of the Art: Screening for VWD and Other Bleeding Disorders: Claire Phillip, MD of the Robert Wood Johnson Medical Center in New Jersey will discuss new screening tools that have been developed for women’s bleeding disorders.

• State of the Art: Diagnosis: Robert Montgomery, MD, of the Medical College of Wisconsin, Connie Miller, PHD, of the CDC, Jorge Di Paola, MD, of the Children’s Hospital of Iowa, and Irene Vlaskamp, a physical therapist in Philadelphia, will discuss how diagnoses are made, modifying factors (blood group, race, presence of factor V Leiden) and correlations between lab tests and symptoms.

• HTC Network: Healthcare Services for Women: Sally Crudder of CDC and Madeline Cantini, BSN, RN, CCRN, of the Gulf States Hemophilia and Thrombosis Center, will discuss comprehensive care for women.

• Obstetric and Gynecologic Manifestations of Bleeding Disorders: It’s Not Just Menorrhagia: Andra James, MD, of the Duke University Medical Center and Karen Ridley, RDH, MS, of the University of Michigan School of Dentistry will discuss manifestations of bleeding disorders in women other then menorrhagia.

• State of the Art: Treatment of Menorrhagia: Nicole Dowling, PHD, of CDC, Andrea Lukes, MD, of the Duke University Medical Center and Peter Kouides of the Mary M. Gooley Hemophilia Center will provide an update on the CDC’s research trial; examine the gynecologic treatment of menorrhagia for women and girls with and without bleeding disorders; and discuss the hematologic treatment for women and girls with a bleeding disorder.

• Bleeding Symptoms in Hemophilia Carriers: RuthAnn Kirschman, RNC, of the University of Colorado Health Science Center will discuss how many medical practitioners are unaware that women and girls have their own bleeding symptoms and issues that warrant serious attention, and in many cases, diagnosis.

Cutting-Edge Research To Be on Display (top)

In August, NHF issued Call for Abstracts for the poster abstracts to be displayed at the Annual Meeting. The abstracts are provided by researchers around the country who are working on projects to benefit the bleeding disorders community. The submissions will be on display from 6:30PM on Thursday to 1PM on Saturday in the Marsalis Hall.

The World Federation of Hemophilia has once again graciously offered to publish a number of our highest-rated abstracts in a future issue of Haemophilia. This will provide a wider exposure in a citable journal for some abstracts presented at NHF’s Annual Meeting. The abstracts will also be published as a special insert in HemAware.

Some of the highlights include:

• A study conducted to assess the impact of volume per dose using two recombinant FVIII products in small children with respect to: 1) loss of venous access during infusion; 2) need for repeat venipuncture to complete treatment; and 3) infusionist qualitative assessment of satisfaction with treatment.

• A study to develop a clinical practice guidelines for bleeding episodes in patients diagnosed with hemophilia or von Willebrand disease that will assist emergency room staffs to improve care.

• A six-session, 18-hour inhibitors program developed to empower parents through education, decrease hospital days, reduce volume of medication needed to treat bleeding episodes and ultimately increase the quality of life for children and their families. The following topics are covered: Understanding Inhibitors, Treating Bleeds, Initiating Immune Tolerance, Promoting Parenting Skills, Coping with Stress, and Moving Forward.

Rap Session for Spanish-Speaking Attendees Debuts Thursday (top)

This year’s Annual Meeting affords NHF a chance to reach out to a large and very important constituency group: namely Spanish-speaking consumers and their families. On Thursday, a rap session will be held for Spanish-speaking attendees at 5:30 in the Cumberland I room. The session, which will be facilitated by Debbi Adamkin, Annual Meeting Working Group co-chair, Maria Castenado and Jorge de la Riva, PT, will allow Spanish speakers to meet one another, exchange information and share interests and concerns in a welcoming atmosphere.

“I think we decided to have the session because we are in Texas [where there are many Spanish-speakers], but I think also there are a lot of Spanish-speaking people that come to these meetings,” says Adamkin. “There was a need for it.” In Adamkin’s community in South Florida, about 85% of families affected by hemophilia are Hispanic. Many of these individuals also speak English, but sessions like this one allow for broader participation while sending the message that is a diverse, welcoming community.

While the rap session is the only program that will be presented exclusively for Spanish-speaking attendees, the following additional sessions will feature simultaneous translation into Spanish:

• Orientation/Welcome Session

• Opening Session

• Everything You Thought You Knew about Bleeding Disorders But Didn’t

• NHF Blood Safety Update

• Ask the Expert: Pregnancy Options

• Transitioning

• Parenting Skills

• Ethics

• Siblings

• State Advocacy Update

• Ports/Prophylaxis/Options

• Global Hemophilia Concerns

• Navigating the Insurance Maze

An Unexpected Life: Film Debuts in U.S. (top)

A documentary entitled “An Unexpected Life: Living with Hemophilia,” which examines the lives of several patients with severe hemophilia in their 60s and 70s made its debut in October at the World Federation of Hemophilia’s World Congress in Thailand. The film, which will also be shown at this meeting on Friday at 3:00 in Reunion Ballroom E, is an astounding snapshot of several men who detail childhoods with a disease for which there was virtually no treatment. In an age of prophylaxis, the struggles previous generations faced in order to survive are startling. In fact, many were told they were not expected to live past their 15 th year. One man told of how his leg was amputated after a fall down the stairs, another woke up 21 days after falling off his bike to a priest reading him his last rites and another stayed in the hospital from the ages of 3 to 16. Since the hospital emergency room was the only place providing hemophilia treatment, people with severe hemophilia had to stay within a certain radius of a hospital emergency room familiar with hemophilia. There they received ice packs and fresh whole blood “and prayed the bleeding would stop.” Advances in technology meant new freedoms for those who previously had to be hospitalized for months, receiving a pint of blood every six hours following a serious bleed. Cryoprecipitate and factor concentrates allowed these men to treat bleeds immediately wherever they were and rehabilitative surgeries were made possible.

Social Worker Bonnie Weissberg and Brad Lewis, MD, the Alta Bates hemophilia treatment center in Berkeley, California, had the idea to make a documentary when they realized that this aging section of the population might not be around much longer to tell their remarkable stories.

In 2002, Weissberg applied for and received a grant from the Aventis Behring Foundation for Research and Advancement of Patient Health (now part of ZLB Behring), an organization that was set up to decide upon the educational merit programs in the community might have, and then to fund those deemed worthy. The documentary project was chosen by the board of the foundation, which is made up of treaters and patient advocates. “I think what they saw here was a group of patients that has been largely forgotten,” says Paul Perreault, vice president and general manager of US commercial operations at ZLB Behring. “These folks have certainly been through a lot, survived a lot, and it would be good to get their perspective on the disease. I think it’s a very worthwhile project.”

Weissberg also approached and received additional funding from Novo Nordisk, Baxter Health Care, Bayer and Wyeth. “I told the companies this is a really exciting project and we really want to see it come to fruition and we don‘t want to see it cut up on the floor because we didn’t have any money,” she says. “I think partly it was my angst that moved them to help but also they agreed that this was extremely important.”

Unfortunately, between the time of the film’s conception and time filming actually began in October 2003, a number of people died who might have been captured on film. Two of the men in the film, both in their 70s, have passed away since production began. “We captured their stories before they left the earth,” says Weissberg. “And to me, this has been the greatest accomplishment because we do have them on film and people can see that these folks were just incredible people.”

Weissberg and Lewis hope that public television stations will be interested in airing the documentary and also want it distributed to medical students to give them an idea of what people with hemophilia face. “Initially, I truly only wanted to document an extraordinary community,” says Lewis, “but I think this became a moving and inspiring story of adversity of a kind most people never see and a testament to the strength of the spirit. I would hope it would inspire many and perhaps move some young physicians and healthcare professionals to consider the field of hemophilia.”

“Big D” – A City of Even Bigger (Unexpected) Delights (top)

 Now that you’re here, enjoy the many new, enjoyable and unex pected surprises here in Dallas. Whether it’s shopping, dining, culture, entertainment or sports, “Big D” offers new and big delights.

Arts and Culture
Nasher Sculpture Center

The nation’s largest urban arts district unveiled its newest jewel in October 2003. The Nasher Sculpture Center, designed by renowned architect Renzo Piano, showcases one of the world’s foremost, privately owned collections of modern and contemporary sculpture and art from the late 19th century to the present. Its adjoining, 1.5-acre serene sculpture garden created by landscape architect Peter Walker features additional works rotating from the personal collection of developer/philanthropist Raymond Nasher.  

Latino Cultural Center

An Old West cattle drive, captured in bronze, is depicted in a new sculpture at Pioneer Plaza, a downtown park. (Photo by Dallas Convention and Visitors Bureau)

Diversity — a Dallas hallmark — is brought to bold new life in the brilliant shape and form of the new Latino Cultural Center designed by celebrated Mexican architect Ricardo Legorreta, which opened last fall near downtown. The mission of the center is to be a focal point for the region’s 800,000-strong Hispanic community and a catalyst for the preservation, development and promotion of Latino and Hispanic arts and culture.

Downtown. Uptown. All Around Town.

Downtown’s Main Street Entertainment District is a historic blend of renovated landmark hotels, lofts, new restaurants, night spots and Stone Street Garden — a cozy walkway just steps from Neiman Marcus where one can browse at Larry’s Stuff for one-of-a-kind gifts or dine at a variety of locally owned restaurants and cafes. The historic Adolphus and Magnolia hotels are additional anchors in this charming and popular area.

Hop the free, historic McKinney Avenue Trolley at the Dallas Museum of Art to popular, bustling, Uptown. Shop the Gallery District at Fairmount Street with more than 40 antique and art galleries, one-of-a kind shops and dining spots. Trolley stops include West Village with more restaurants, clubs, retail and two full-service boutique hotels (Hotel ZaZa and Crescent Court). Visit Dragonfly at Hotel ZaZa under the direction of renowned chef Stephen Pyles or dance the night away with live music at Beau Nash in Hotel Crescent Court, named by Food & Wine Magazine as one of the Top 10 grills in America.

Other entertainment districts surrounding downtown include Deep Ellum for clubs, cuisine, retail and art; Knox-Henderson and Lower Greenville Avenue for dining, unique cafes and specialty shops; and West End for pubs, restaurants and shops on the DART light rail line. Board DART near the Hyatt Regency Dallas at Reunion at the Union Station stop.

Dining

Known in past years for having more restaurants per capita than New York City, Dallas’ constantly-evolving, ever-growing culinary options defy ongoing statistical accuracy. Uptown boasts more than 80 restaurants along popular McKinney Avenue. And the area’s other special districts — Lower and Upper Greenville, Knox-Henderson, West End, Main Street with its Stone Street Gardens, and Deep Ellum — contribute nationally known names and home-grown, locally owned popular spots. One thing is certain: with more than 79 international cuisines, more four- and five-star restaurants than New Orleans and renowned chefs from Dean Fearing and Kent Rathbun to Stephen Pyles and Christof Syre, Dallas provides consistent culinary quality and talent.

Shopping

In a city that counts Neiman Marcus as its own, more than 33 shopping centers, wholesale centers, the Dallas Market Center’s nationwide customer base and more, Dallas has fashion covered. Well-known centers that are a magnet for regional and national clients include Galleria Dallas, NorthPark Center, Highland Park Village, West Village and many more.

Professional Sports

Seven professional sports teams provide year-round variety in football, arena football, basketball, hockey, indoor and outdoor soccer and baseball. And the American Airlines Center, new home of the NBA Dallas Mavericks basketball teams, is a popular venue bridging Uptown and the West End entertainment districts and offers a full calendar of sports, rodeos and concerts.

Airport Expansion

In 1965, the cities of Dallas and Fort Worth agreed to build an airport to serve the entire region. DFW International Airport opened in 1973. The largest capital development plan in DFW International Airport’s history is underway, doubling its capacity to 250 gates, adding a new 1.8 million square-foot international terminal and providing a “people mover” system with an eight minute, end-to-end terminal connection.

National Youth Leadership Institute Opens (top)

 This week, NHF will officially open the new National Youth Leadership Institute, where young bleeding disorders community members can learn things that will help them become tomorrow’s community leaders.

The volunteers and professionals at NHF take seriously the need to identify and cultivate a new generation of leaders for the bleeding disorders community. It is particularly important to provide encouragement, support, and most importantly, leadership opportunities, to the “best and brightest” of the young people in the community.

The goal of the NYLI is to identify young adults in the community with strong leadership potential, provide them with forums for learning about leadership and honing their skills and get them involved in a hands-on way with significant projects that benefit their local bleeding disorders communities. Participants will participate in sessions and activities at this meeting that focus on honing leadership skills, teambuilding and problem solving.

At the end of the initial three-day session, participants will be engaged in a process to help identify an appropriate project at their home chapter/association or camp and to begin laying out a strategy to implement the project. Participants will also work with local mentors, who will be identified by the chapter/association or camp.

“The hands-on aspect of the program is crucial because talking about leadership is great, but the best learning happens when ideas are put into action,” says Phil Kucab, a member of the boards of the Hemophilia Foundation of Michigan and NHF and an activist for youth issues in the bleeding disorders community. “The Institute will also give young leaders a chance to share their own ideas and to give each other encouragement and support,” says Kucab.

Initially, the NHF NYLI is open to young adults, 18 years of age or older, who are themselves affected by a bleeding disorder or who are the close relative or friend of a directly affected person. Chapters and local hemophilia associations were requested to designate up to two young adult delegates who exhibit above average leadership potential. Scholarships were available for delegates to attend the initial meeting. Youths who are younger than 18 are also able to participate under certain conditions. Chapters and associations were also asked to nominate adult mentors who can provide guidance and support.

Meet the New NHF Board of Directors (top)

NHF would like to welcome its new Board of Directors to Dallas. Meet the new people, and some veteran ones, who will be guiding NHF’s service to the bleeding disorders community over the next few years. The board will have its first meeting this Sunday, where it will elect new officers. The Board was elected in September by members of NHF’s chapters across the country.

Clifford Cohn

Clifford Cohn is an attorney with Cohn & Associates in Philadelphia who specializes in the representation of individuals, professionals and businesses. He has served on the board of the Delaware Valley Chapter of NHF since 1995 and was president of the chapter until June of 2004. Cohn has also served on the boards of Glasstech, Inc., Leslie Fay Companies, Inc., and Sassco, Ltd. In 1994, he spoke at the Medical College of Pennsylvania’s False Memory Syndrome Conference. Cohn has special knowledge and experience in the areas of advocacy and finance.

Rita Gonzales

Rita Gonzales is president and founder of The Switchboard and The Baby Switchboard in Houston, Texas. She was a member of NHF’s transition board and has served three terms as president of Lone Star Chapter of NHF. Gonzales is vice-chair of Sheltering Arms Senior Services, and has served on the board of The Women’s Home and St. Anne Catholic School. She is bilingual in Spanish and has knowledge and experience in the areas of fund raising, public relations and information and education.

Paul Haas

Paul Haas is a recently retired economics professor at Bowling Green State University in Ohio. Haas was a member of NHF’s transition board and currently serves on the Health and Human Services Blood Safety and Availability Committee. He was formerly a member of the Food and Drug Administration’s Blood Products Advisory Committee and was a past president of NHF’s Board of Directors. Haas has also served on the Advisory Committee for the Hemophilia Program for the State of Ohio, served in various leadership roles with Northwest Ohio Hemophilia Foundation, was a past president of United Health Services and a past director of the University Honors Program at BGSU. Haas has knowledge and experience in the areas of advocacy and information/education.

Arthur Herman

Arthur Herman is a software developer with Home Depot in Canton, Georgia. Herman previously served as president and owner of an accounting software consulting company. Her served on NHF’s interim board and is a Hemophilia of Georgia board member. Herman is active with Cobb County Schools Career and Technology Advisory Committee, the Cub/Boy Scouts, Habitat for Humanity, Girls Inc., and West Fulton Middle School as a tutor. He has knowledge and experience in the areas of fund raising, finance and corporate governance.

Elizabeth Kallberg

Elizabeth Kallberg is a homemaker in Prior Lake, Minnesota and a partially retired registered nurse at Fairview University Medical Center. In 2004, she served as co-chair of the Hearts of Hope Gala for the Hemophilia Foundation of Minnesota/Dakotas. Kallberg has also served on the boards of the Metropolitan Visiting Nurses Association in Minneapolis and the Memorial Blood Bank. She is a past president of the Minnesota Hemophilia Chapter. Kallberg has knowledge and experience in the areas of fund raising, public relations, advocacy and finance.

Carol Kasper, MD

Carol Kasper, MD, lives in Pasadena, California, and is a professor emerita of Medicine at the University of Southern California. She served as an NHF interim board member, as medical director for the World Federation of Hemophilia, on NHF’s Medical and Scientific Advisory Committee and as Director of the hemophilia treatment center at Orthopaedic Hospital. Kasper has knowledge and experience in the areas of information and education and research and treatment.

Steven Koch

Steven Koch is a business professor at the University of Houston. He is a past general manager at Pennzoil-Quaker State Chemicals. Koch serves as a faculty advisor to the Business Marketing Association, and is responsible for a business consulting lab program at the University of Houston. He has knowledge and experience in the areas of marketing, public relations, finance, corporate relations at the senior executive level and fund raising.

Phillip Kucab

Phil Kucab is a pre-medical student (undergraduate) at the University of Michigan in Ann Arbor. He is also a research assistant for a project related to Factor VIII mutant constructs. Kucab served as an NHF interim board member, is camp director for Camp Bold Eagle and Eagle Expedition, is a member of Hemophilia of Michigan’s board and chair of the Board Development Committee. He has served as chair of NHF’s Youth Leadership Task Force and is now mentor. His fundraising involvement includes a video production netting outside donor dollars for HFM and golf outings for HFM. Kucab has knowledge and experience in the areas of fund raising, public relations, advocacy and research and treatment.

Kenneth Mann, PHD

Kenneth Mann is a professor and chair of the Department of Biochemistry and professor of medicine at the University of Vermont. Mann, who lives in Grand Isle, Vermont, served as an NHF transition board member. He is also chair of NHF Research Working Group, a past vice-chair of medicine at the Mayo Clinic, past associate editor of Blood and presently associate editor of The Journal of Thrombosis and Hemostasis and The Journal of Atherosclerosis and Thrombosis. Mann has held volunteer positions with the National Institutes of Health, the American Heart Association, the American Society of Hematology, the International Society on Thrombosis and Hemostasis and the American Society of Biochemistry and Molecular Biology. He has knowledge and experience (36 years) in the areas of hemostasis research and treatment, information and education, public relations and advocacy.

Richard Metz, MD

Richard Metz is a doctor of internal medicine in a Los Angeles private practice. Metz is also an associate clinical professor of medicine at the University of California at Los Angeles and a past chief of staff at Century City Hospital. He has served as president of NHF’s Board of Directors and was head of NHF’s transitional board. Metz was an NHF Advocacy Chair and member of the Communication Committee, a past president of the Hemophilia Foundation of Southern California and a past member of Board of Governors of Century City Hospital. Metz has knowledge and experience in the areas of advocacy and information and education.

Michael O’Connor

Mike O’Connor is retired from 20 years at the Mayo Clinic where he served as a project manager and a radiation oncology physicist. Now living in Mesa, Arizona, he was a member of NHF’s transition board member and has served as president, vice president and general board member of NHF’s Arizona chapter. O’Connor spearheaded development of a bleeding disorders summer camp in Arizona and was involved in the creation of fundraising and educational events. O’Connor has knowledge and experience in the areas of fund raising, public relations and advocacy.

Michael Self

Michael Self is an attorney in private practice with the law firm of Self & Bhamre in Newport Beach, California. Prior to becoming an attorney in 1987, Self was a CPA at Waterhouse. He served on NHF’s transition board and was instrumental in re-drafting NHF’s bylaws and certificate of incorporation. He has served on the board of the Hemophilia Foundation of Southern California (vice president of administration and executive committee), the Santa Ana Country Club and Volunteer Center of Orange County. Self serves as legal counsel to nonprofit entities. Self has knowledge and experience in the areas of law, accounting, finance, investment and risk management.

Susan Shurin

Susan Shurin, of Shaker Heights, Ohio, is a professor of Pediatrics and Oncology at Case Western Reserve University in Cleveland, Ohio. She was the chief of pediatric hematology/oncology at the Rainbow Babies and Children’s Hospital and the director of pediatric oncology at the Ireland Cancer Center of the University Hospitals of Cleveland. Shurin’s civic activities include volunteer work for Plymouth Church of Shaker Heights, support of local museums, farmer’s market and hunger centers. Her professional volunteer activities include leadership in the American Society of Hematology, the American Society of Hematology/Oncology, the Children’s Oncology Group, the National Childhood Cancer Foundation and service as a consultant for the Food and Drug Administration’s National Heart, Lung and Blood Institute. She has knowledge and experience in the areas of governance, public relations, advocacy, information and education and research and treatment.

Ray Stanhope

Ray Stanhope is a retired engineer in the semiconductor industry in Sugar Land, Texas. He is former treasurer and president of the Greater Houston Chapter of NHF. Stanhope has served as vice president of chapter affairs and president of NHF. He is a board member of American Liver Foundation’s South Texas Chapter and a member of that chapter’s Golf Tournament Committee. He has contributed to state advocacy work for NHF’s Lone Star chapter the American Liver Foundation. Stanhope has knowledge and experience in the areas of fund raising, public relations and advocacy.

Wyeth Pharmaceuticals Receives Food and Drug Administration Approval for New Delivery System for ReFacto® Antihemophilic Factor (Recombinant) (top)

Wyeth Pharmaceuticals, a division of Wyeth (NYSE:WYE), announced that it has received approval from the U.S. Food and Drug Administration (FDA) for the ReFacto ® Antihemophilic Factor (Recombinant) R2 Kit, the first needle-less reconstitution device with a prefilled diluent syringe (R2 stands for Rapid Reconstitution). ReFacto is a recombinant factor VIII product formulated without human serum albumin in its final formulation.

Compared with the previous method for reconstituting ReFacto, the R2 Kit provides a faster and simpler infusion process. The R2 Kit contains a syringe prefilled with diluent, a vial adapter, and a single-use vial of ReFacto containing either 250, 500, 1000, or 2000 IUs. The adapter is placed on the vial of ReFacto, and the adapter and prefilled syringe allow ReFacto to be reconstituted without the risk of needle exposure.

“The ReFacto R2 Kit, with its simpler and faster infusion process and fewer components will enable ReFacto patients to spend less time infusing and more time living their lives,” said Dr. Gary L. Stiles, Executive Vice President and Chief Medical Officer of Wyeth Pharmaceuticals.

Wyeth anticipates that the ReFacto R2 Kit will be available in the 4th quarter of 2004.

Education is the Key at Hemophilia Health Services (top)

Hemophilia Health Services’ (HHS) theme for this year’s NHF Annual Meeting is “Education is the Key.” The staff of HHS has always been committed to education, and we use our creative energy, compassionate spirit, caring attitude knowledge and experience to empower, educate, serve, support, satisfy and provide choices to all those whose lives are affected by hemophilia.

Hemophilia Health Services is the nation’s largest supplier of clotting factor, but our services include much more than factor delivery. Each patient at HHS has a care team that supports your clinician with therapy monitoring to reduce the number of bleeds, minimize the number of infusions, and decrease the number of ER and hospital visits. HHS also protects your insurance coverage by therapeutic economics and assay management. Achieving these goals leads to fewer days missed from school and/or work and an enhanced quality of life.

The HHS booth (#313) will be the site of many activities. We will have a display unveiling the new HHS web site, www.HemophiliaHealth.com. The site features an expanded children’s activity section, exciting new graphics, and will be packed full of educational resources for the bleeding disorders community. Be sure to stop by for a demonstration.

Continuing with our education theme, HHS will hold a drawing for one attendee to win a laptop computer. HHS will have entry forms available at the booth beginning Friday, November 5. You can enter the drawing until 11:30 a.m. on Saturday, November 6. You must be present to win. Any HHS representative at our booth can supply you with an entry card.

A special guest will also be making appearances at our booth. Beginning Friday, Welligan Hugsley, HHS’ beloved company mascot, will be available to greet attendees.

There’s a lot of activity, a lot of fun, and lots to learn about Hemophilia Health Services.

AHF ® Inc. Proudly Welcomes Mark Zatyrka to Its Staff (top)

In his own words…

“As someone living with hemophilia, Hepatitis C, and HIV, the hardest thing for me was not being able to talk to anyone. I was afraid to tell people I had hemophilia … afraid they’d make the connection between hemophilia and HIV.

At hemophilia camp, I finally felt free to express myself and to be myself. At camp, kids are no longer kids with AIDS or hemophilia or cancer… they are just kids. After being a camper for several years, I wanted to be a counselor and give something back to children facing many of the same challenges I had faced.

My camping years gave me the courage to openly share my experiences. In high school I began speaking at schools, colleges, and youth groups about camp, AIDS, and hemophilia. Audience reception was overwhelming. Kids would come up to me in tears sharing stories about loved ones or how I had changed their perceptions. I’m not a great speaker; I just speak from the heart.

Since then …I graduated from College with honors; interned for MTV Films in Hollywood and New York; and interned for VHI On-Air Productions. Last summer I backpacked across Europe and came home to start my own video production company. I truly believe that life is only good if you truly live it. I try to live everyday as if it were my only day, to treat everyone better than I want to be treated, to complete projects as if they were my legacy, and to keep smiling through it all.

I’m now a part of the AHF team and I have the chance that I’ve been waiting for…to talk with and answer the millions of questions that new parents and families have about life…and living…with bleeding disorders. AHF is a wonderful place for me to give back some of the help and support I have received from others.

The Myth of “Adequate Funding” (top)

What is adequate funding for a disease specific PSI assistance program? Adequate usually connotes two things depending on the context — it is enough, or just getting by. Adequate funding only allows PSI to “get by”…but not really.

• Adequate could cause a person to lose a home.

• Adequate could cause a person to be unable to afford treatment and thus die.

• Adequate could cause a person to become financially destitute.

• Adequate does not allow for any other help to get a person on his/her feet.

• Adequate may maintain current client caseloads, but will not allow assistance to additional clients.

Most people know that PSI is able to provide assistance in various disease areas based on donations. It is simple logic that PSI is only able to provide assistance in direct proportion to the funds received. If funding remains level or decreases, is that adequate?

Each year, the PSI budget requests that donors take into consideration the number of patients currently being processed by PSI. If the amount requested remains level or decreases, PSI is unable to assist the current patient caseload, much less process additional patients in the upcoming fiscal year. In addition, insurance/medical costs increase 9 to 13% from year to year.

PSI is committed to providing assistance to those in extreme circumstances. However, there are times when we are forced to turn clients away. We then hear from a donor that the “adequate” donation should allow us to provide assistance to all those referred to us. As you can see, “adequate” is often a misnomer. “Adequate” to PSI translates into a deficit when we receive level or decreased funding.

For those who diligently stand against the “myth of adequate funding,” we salute you. An “adequate” mentality does not provide the tools to win in a situation; but rather jeopardizes the possibilities of success.

NewLife Homecare, Inc. Adopts Consumer Bill of Rights (top)

NewLife Homecare has implemented a Consumer Bill of Rights. It is intended to inform, educate and protect individuals in the bleeding disorder community. Every person has rights and responsibilities especially when it comes to medical care. The Consumer Bill of Rights ensures that the bleeding disorder community is treated fairly, kept informed and receives safe and humane treatment. It is also written in a language that is easily understood.

There is a choice when it comes to the quality of care and services needed to effectively manage a bleeding disorder. There are many organizations to choose from but few that equip you with the power of knowledge and the freedom of choice you need to live a happy and fulfilling life. The Consumer Bill of Rights essentially ensures exceptional home infusion and health care services that you receive from NewLife Homecare.

NewLife Homecare, Inc. is a for-profit organization located in Pittston, Pennsylvania. Its staff takes pride in meeting and exceeding the complex challenges that face the bleeding disorders community. Its focus is not only on the physical aspects but also on the mind and spirit. Their staff provides individualized service and a holistic approach to home care that is unmatched by other companies in the industry.

The president and CEO of NewLife Homecare, Father Gregory Malia, lives with hemophilia and can relate to the challenges on a very personal level. The entire staff is professional, knowledgeable and a great support resource that includes advocacy. Their interdisciplinary team consists of nursing, pharmacists, support services, patient advocacy and pastoral care for all families that is available 24 hours a day.

If you would like to learn more, visit NewLife Homecare at booth # 517 or call toll free 877-707-LIFE (5433).

Schlesinger Associates Opens S.F. Office (top)

For over 35 years, Schlesinger Associates has provided marketing research data collection services that help companies understand their potential influences in the marketplace. Over this time, we have amassed the technical expertise and extensive market knowledge to provide clients with a comprehensive range of quantitative and qualitative research services in desirable markets. We have established high standards of professional, courteous, quality service - standards we measure ourselves against on every project.

As our clients’ needs evolve, so do we. Schlesinger Associates is focused on continually expanding and improving our focus group facilities in order to give our clients something different, something bigger, something better, from client work space to extraordinary security measures to outlets for laptops.

With offices now in 10 markets - Atlanta, Boston, Chicago, Dallas, Los Angeles, New Jersey, New York, Orlando, Philadelphia, and San Francisco — we take the time to hear, understand and respond to client requests — no matter how immense or minute that request may be.

At Schlesinger Associates, consumers and professionals can share in the excitement of marketing research by participating in focus group discussions. Focus groups are informal gatherings in which you share opinions about products and services, and in doing so, have an incredible influence on their development. Participants have influenced the development of movies, software, automobiles, food and medical drugs. And focus group participants have the added benefits of receiving cash honorariums for their time, meeting others in the same field, sharing their viewpoints and making their opinions count.

Call us at 866.549.3500 or visit www.SchlesingerAssociates.com.