News: thursday highlights
Thursday | Friday
| Saturday & Sunday
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,
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
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
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.”
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
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
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
people with hemophilia.
PT-focused sessions will continue throughout the meeting.
includes a networking breakfast where participants will have the
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.
procedures and surgeries, the problems of obesity, chronic pain
issues, sports and nutrition and orthotics and adaptive devices.
will have the
opportunity to complete their CDC/UDC check-off Friday or Saturday
For Mulvany, the need for this meeting is compounded by the fact
that PTs otherwise receive little education about this patient
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
She is grateful for the scope of knowledge that this meeting
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.”
SUMMER CAMPS CAN HELP CHILDREN MANAGE BLEEDING DISORDER
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
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
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
campaign, Do the 5! These five steps include:
treat bleeds early and adequately;
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
can attend the Summer Camp Preconference Symposium to learn
EACH DAY'S SCHEDULE OFFERS SOCIAL WORKERS
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
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.”
|The codes above each session indicate that
session’s primary audience.
= Chapter Staff
= Chapter Staff Organization
= All Providers (nurses, physicians, physical therapists, social workers)
= Physical Therapists
= Social Workers
= New Families
INDUSTRY-SPONSORED SYMPOSIUM I
Perspectives on progress: Advances in the treatment of hemophilia A
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?
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
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.
Strategic planning for
local and state hemophilia organizations
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
Speakers: Katherine Ponder, MD; Roland Herzog,
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
Can proteomics improve the diagnosis, prophylaxis, and therapy in hemophilia?
See the precon page for details.
PHYSICAL THERAPIST PRECON
Kinesiology of gait--functional analysis of hemophilia plan for intervention
See the precon page for details.
SOCIAL WORK PRECON
Issues of intimacy and sexuality
See the precon page for details.
Hepatitis C and HIV co-infection: How do we counsel patients with hepatitis C?
See the precon page for details.
SUMMER CAMPS PRECON
See the precon page for details.
Sponsored by Wyeth
Speakers: Calvin Price, CPA and Ruth Mulvany,
MS, PT; Phillip Kucab;
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.
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
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
An opportunity for social workers to meet and learn about each others’
work in an informal way.
YOUNG ADULT RAP SESSION
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.
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