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updated 11/8/03

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NURSING SESSIONS TO ADDRESS HEPATITIS C, HIV RESEARCH

Attendees of the nursing preconference session Thursday will get a plateful of information about hepatitis C and HIV, said moderator Chris Guelcher, MS, RNCS, PNP.

The session will cover several issues, including:
• how to counsel patients with hepatitis C and with HIV coinfection;
• practical aspects of caring for patients with hepatitis;
• a medical overview and patient perspective of hepatitis C and, specifically, the impact of HIV coinfection;
• MASAC guidelines and the National Institutes of Health (NIH) white paper.

“The one thing that I want to emphasize is that this forum will be geared for nurses,” Guelcher said. “We are going to have a medical overview that Carolyn Francis, RN, CNP, MSN, is providing on lab analysis, when liver biopsies are applicable and what can help us glean more information from the patients.”

Renee Killian, RN, MPH, will talk about counseling patients with both hepatitis C and HIV.

“She will go into what treatments are available, and she will touch on the NIH white paper that has come out as a result of some of the things we have learned about patients who contract both these diseases,” Guelcher said.

Susan Karp, RN, MS, will present two case studies of liver transplants in coinfected patients, Guelcher said.

The reality is that the list of patients infected with the hepatitis C is now acute, while HIV is leveling off a bit, she said.

“Obviously this is an address intended for treating the patients with the hepatitis C disease and hemophilia,” Guelcher said. “This has been less of an option for HIV patients, but now it is more so. Things have now flipped because the HIV disease can now be much better controlled, whereas hepatitis C is becoming a more acute issue.”

Guelcher said that the forum will also feature a patient who will talk about his experiences in treatment.

“He is very involved in the hemophilia community,” she said. “And he is also part of an advocacy group. He will give his perspective as a patient, which I think will be wonderful for these nurses to hear.”

Guelcher said there will also be time at the end of the forum for discussion of the various issues that will be presented.

“ We want people to talk about these issues and bring their own experiences to the table,” Guelcher said. “That is the way we are going to be able to move forward.”

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MEETING GIVES PTs WELL-ROUNDED EDUCATIONAL EXPERIENCE

Physical therapists will be treated to a wide range of educational opportunities during the NHF Annual Meeting. With a theme of “Many Stories, One Voice,” planners developed a variety of lectures, workshops and interactive discussions specifically for physical therapists.

According to Ruth Mulvany, MS, PT, Annual Meeting co-chair, thanks to this well-rounded program, physical therapists will learn about the latest treatment advances to facilitate patient care.

“ Physical therapists are seeking ways to improve their skills, enhance their understanding and provide optimal physical therapy to the bleeding disorders community. Those involved in bleeding disorders or orthopedic management of arthritis and joint disease will benefit from participating in the NHF Annual Meeting,” said Mulvany, associate professor of physical therapy at the University of Tennessee Health Science Center, Memphis.

The Annual Meeting schedule is packed with wonderful opportunities to learn, network and share knowledge, including two Thursday preconference efforts, noted Mulvany.

On Thursday, the PT Working Group Meeting will allow attendees to discuss ways to improve their service to NHF and patient care, and an expert on gait analysis and orthotics will give a presentation on intervention plans for people with hemophilia.
PT-focused sessions will continue throughout the meeting.

Friday includes a networking breakfast where participants will have the opportunity to discuss outcomes measures for bleeding disorder management and research and sessions on the National Prevention Program report, management of muscle bleeds and anatomy and kinesiology of the knee.

Saturday, presenters will examine orthopedic procedures and surgeries, the problems of obesity, chronic pain issues, sports and nutrition and orthotics and adaptive devices. PTs also will have the opportunity to complete their CDC/UDC check-off Friday or Saturday morning.

For Mulvany, the need for this meeting is compounded by the fact that PTs otherwise receive little education about this patient population. “In our seven years of academic preparation and when we attend professional meetings and continuing education workshops, minimal emphasis is placed on bleeding disorders because they are so rare. For those of us who treat bleeding disorders, we find that the management of these disorders is one of our greatest challenges,” said Mulvany.

She is grateful for the scope of knowledge that this meeting provides. “We come here hungry for knowledge and for time together to learn from one another and to share our ideas and insights,” said Mulvany. “Without these meetings and these educational opportunities, we would have little to go on, and the quality of care for people with bleeding disorders around the country would suffer. Here is where we learn how to provide the best of care to our patients and their families.”

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SUMMER CAMPS CAN HELP CHILDREN MANAGE BLEEDING DISORDER CHALLENGES

Special summer camps provide a safe environment for children to enjoy recreational activities, with a little bit of education
about managing their bleeding disorders.

Most children with bleeding disorders rarely come in contact with another child who is also managing a bleeding disorder. Summer camp programs for children with bleeding disorders allow them to meet children with the same challenges, build new friendships and share in a great educational experience.

According to Mike Rosenthal, executive director of the Hemophilia Association in Arizona, children with bleeding disorders have nearly 50 bleeding disorder-summer camps nationwide to choose from. Rosenthal, who manages a bleeding disorders camp in the foothills near Prescott, Arizona, said camps are situated throughout the United States, meaning children don’t have to venture too far from home to find a camp. The American Camping Association accredits many of the camps. Aside from standard camp fare such as crafts, physical education, water sports and other recreational activities, education is an integral part.

“ Kids are having so much fun at the camps, you can slip the education in there and they don’t become bored,” said Rosenthal.

The educational program these camps use follows the National Hemophilia Foundation’s campaign, Do the 5! These five steps include:

• treat bleeds early and adequately;
• exercise regularly;
• visit a treatment center annually;
• get checked for blood-borne viruses;
• get vaccinated for hepatitis A and B.

Most of the counselors and staff are adults managing bleeding disorders. The staff is composed mostly of volunteers and often includes nurses and doctors from nearby communities. Most of the camps are free and open to children ages 7 to 17. Some camps are also designed to educate parents and siblings on the management of bleeding disorders.

Rosenthal is also co-chair of the Summer Camp Preconference Symposium, scheduled for 2 p.m. Thursday, where both camp organizers and camp attendees can meet to discuss camp-related issues.

“These camps have been around for 20 to 25 years, but their popularity has grown quite a bit in recent years,” Rosenthal said. “The preconference session is a good opportunity for people to find out more about starting up a camp or just attending one.”

The second annual North American Camping Conference of Hemophilia Organizations (NACCHO) conference is scheduled for February 1 in Tempe, Arizona., and is another great tool for interested camp organizers, said Rosenthal. The NACCHO conference is sponsored by Wyeth Pharmaceuticals, with travel and financial help available. Rosenthal said individuals interested in the NACCHO conference can attend the Summer Camp Preconference Symposium to learn more.

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EACH DAY'S SCHEDULE OFFERS SOCIAL WORKERS
OPPORTUNITY FOR ADVANCEMENT

Social workers examining the NHF Annual Meeting schedule will find no shortage of events, seminars and workshops to keep their days packed.

“ We have a terrific lineup intended for social workers, as well as a number of other things of significant interest,” said Jim Knappe-Langworthy, MS, LICSW, of the Mayo Clinic.

“ Our pre-conference symposium really looks interesting,” he said of the session “Issues of Intimacy and Sexuality,” presented by Kathy Parish, PhD, from 2 to 5 p.m. on Thursday. “Kathy Parrish is a psychologist who is heavily involved in the hemophilia community, so I’m excited about that.”

Thursday’s Opening Reception, from 6:30 to 9:30 p.m. is a useful networking event for those who have attended the Annual Meeting before, as well as first-time attendees.

“ Social workers here for the first time can meet more experienced folks and get some tips,” Knappe-Langworthy said.

Some other sessions of interest, he said are:

• “Creative Social Work Programming,” from 11:30 a.m. to 1:30 p.m. on Friday, presented by Susan Kocik, MSW, and Dawn von Mayrhauser, MSW. “The hemophilia community has done a lot of innovative programming over the years. This is a more formal way to present outreach programs, camp programs and support for couples,” Knappe-Langworthy said.

• “Social Work Research,” from 3 to 4 p.m. on Friday, a session for which Knappe-Langworthy is moderator. “The presentation is by two people (Karyn Walsh, MSW, and Kelly Williams, MSW, LCSW), who received the NHF Social Work Excellence Fellowship. They will talk about how they developed their research and how it is applicable to social workers in the field.”

• “Group Therapy for Preschool Children with Hemophilia,” from 4 to 5 p.m. on Friday, will be presented by Gaby Golan, PhD, and Gina Goldstein, MSW. “Gina Goldstein is from Israel, and she has been doing this work for some time,” Knappe-Langworthy said.

• “Addictions,” from 9 to 11 a.m. on Saturday, will be presented by Dana Appling, LLSW. “This is a problem for society at large, but particularly people with hemophilia,” Knappe-Langworthy said.

• “Transitioning,” from noon to 1 p.m. on Saturday is a physician session, but it will focus on guidelines established for nurses and physical therapists. “That is really a hot issue,” he said.

• “Living With Chronic Pain,” from 3:30 to 5:30 p.m. on Saturday is a joint session with nurses and physical therapists. The presenters are Kevin Schoenberger, PT, Kathryn Smolinski, MSW, and Michelle L. Witkop, APRN, BC. “This is a huge issue in hemophilia,” Knappe-Langworthy said. “This is an issue in my mind that we could stand to do more with.”

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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
Perspectives on progress: Advances in the treatment of hemophilia A

 A 
8:00am-10:00am
An in-depth look at the evolution of recombinant factor VIII therapy from the perspective of safety, efficacy and convenience.
Sponsored by Bayer Corporation

INDUSTRY-SPONSORED SYMPOSIUM II
Seeking normalcy: How hard to we push our youngsters?

 A 
8:00am-10:00am
Speakers: Thomas Abshire, MD; Nancy Roy, RN; Tim Grams; Doreen Rousseau
Children with hemophilia A and their parents have opportunities today that were not available to previous generations. Since 1987, safer factor products and the adoption of specific treatment regimens have allowed youngsters to pursue activities one forbidden. Considering these new options, how far do parents push their sons to be "normal" as they try to be like their peers? This symposium explores the background creating these new opportunities from a clinical point of view. Real life issues that parents and members of the hemophilia community face when they make decisions of this matter will be discussed, remembering how their fears and barriers can be easily passed on to their children. There will also be time to pose questions and share experiences.
Sponsored by Aventis Behring

FEDERALLY-FUNDED HTC STAFF MEETING
 P 
8:00am-10:30am
This meeting is open to all staff of federally funded hemophilia treatment centers to discuss issues related to federal funding, policies, the Centers for Disease Control and Prevention (CDC) surveillance activities and the Maternal and Child Health Bureau (MCHB) programs. Representatives from CDC and MCHB will lead the discussions.

CHAPTER TRAINING
Strategic planning for local and state hemophilia organizations

 CS 
10:00am-1:00pm
Moderator: Thomas Gauthier, CAE, ACSW
Speakers: Patricia Dominic, Ivan Harner
A panel of dynamic chapter executives will discuss successful strategic planning models, common mistakes and how to transform your plan into something actionable in order to achieve results and much more. Bring examples of your plan to share.

GENE THERAPY UPDATE
 MD 
11:00am-1:30pm
Speakers: Katherine Ponder, MD; Roland Herzog, PhD;
Gilbert White II, MD; Catherine Manno, MD

This session will focus on approaches to gene therapy for hemophilia, results with gene therapy in animal models and different gene therapy trials in patients with hemophilia. Key issues, such as viral and non-viral vectors, toxicity in different approaches and the risk of inhibitor formation, will be addressed.
Co-Sponsored by Avigen and Bayer

PHYSICIAN PRECON
Can proteomics improve the diagnosis, prophylaxis, and therapy in hemophilia?

 MD 
2:00pm-6:00pm
See the precon page for details.

PHYSICAL THERAPIST PRECON
Kinesiology of gait--functional analysis of hemophilia plan for intervention

 PT 
2:00pm-6:00pm
See the precon page for details.

SOCIAL WORK PRECON
Issues of intimacy and sexuality

 SW 
2:00pm-5:00pm
See the precon page for details.

NURSING PRECON
Hepatitis C and HIV co-infection: How do we counsel patients with hepatitis C?

 RN 
2:00pm-5:00pm
See the precon page for details.

SUMMER CAMPS PRECON
 A 
2:00pm-5:00pm
See the precon page for details.
Sponsored by Wyeth

ORIENTATION/WELCOME SESSION
 A 
3:00pm-4:00pm
Speakers: Calvin Price, CPA and Ruth Mulvany, MS, PT; Phillip Kucab; Susan Soleil
First time at an NHF Annual Meeting? Then join us for the orientation session. All Annual Meeting attendees are welcome to meet key NHF volunteers and staff, as well as representatives from the local, host chapter—the Utah Hemophilia Foundation. Get helpful hints on navigating the meeting from the 55th Annual Meeting co-chairs and the NHF Youth Leadership Task Force chair.

PARENTS/FAMILY RECEPTION
 C   NF 
4:00pm-6:00pm
In a foundation with a 55-year history, it is important for new families and parents to meet each other and to mingle with “senior” members and families. This reception is an important place for informal information-gathering and the important networking that an NHF Annual Meeting affords everyone.
Sponsored by Bayer

CHAPTER RECEPTION
 CS 
5:00pm-6:00pm
A chapter leadership and NHF leadership “mixer.” This is an opportunity for informal discussion of direction and priorities, getting to know new staff and volunteer leaders and getting re-acquainted with “old” staff and volunteers.

SOCIAL WORKER RECEPTION
 SW 
5:00pm-6:00pm
An opportunity for social workers to meet and learn about each others’ work in an informal way.

YOUNG ADULT RAP SESSION
 C 
5:00pm-6:30pm
This is an opportunity for members of the Youth Leadership Task Force and other youth attending the meeting get to know each other and to talk informally about issues of concern. This precedes the start of the Youth and Adolescent Program, which runs Friday and Saturday and in which they volunteer.

OPENING RECEPTION
 A 
6:30pm-9:30pm
The opening reception is the place to be on Thursday night! Join NHF in the Exhibit Hall for refreshments, entertainment and your first opportunity to browse through the Exhibit Hall displays. Be there to participate in NHF's Do the 5! game.

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