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Family Lodge at NIH dedicated
Personal stories can have a positive public impact. Such as in the case of
the family lodge planned for NIH.
A ceremony marking the naming of the facility was held Wednesday, April 17,
at the Russell Senate Office Building in Washington, D.C. The Foundation for
the NIH formally accepted a $3 million donation from The Edmond J. Safra Philanthropic
Foundation and announced the dedication of the Edmond J. Safra Family Lodge
It was a personal story that caught the eye of Lily Safra, wife of the late
Edmond Safra, who passed away in 1999. In the Foundation's annual report, she
read the account of a patient with metastatic kidney cancer whose local doctor
had told him nothing more could be done, but that the NIH was conducting a clinical
study that might help. The patient would undergo an experimental bone marrow
transplant at NIH Clinical Center, which required he and his wife remain nearby
for several months.
When that story drew Mrs. Safra's attention, she stepped forward with a contribution
to the Foundation's Family Lodge Campaign. Her husband had suffered from Parkinson's
Disease, so she knew firsthand about the challenges of being a daily caregiver.
Unlike many families dealing with illness, however, she possessed the financial
resources to ease the burden. It was her empathy for patients and their families
in their most dire moments that inspired Mrs. Safra's gift.
At a mid-day ceremony in the Senate Caucus Room, Mrs. Safra related that the
Lodge reflects "the spirit and values" of her late husband."
"When my husband became ill, my world narrowed quickly. Helping Edmond
was not my most important goal; it was my only goal," she said.
The lodge is planned as a temporary residence for caregivers of patients taking
part in clinical trials. In his remarks Dr. John Gallin, director, NIH Clinical
Center, told the audience that patients come from every state in the union,
traveling great distances because of the hope that NIH provides - hope that
"our research will save their lives, or improve the lives of family members,
or the lives of others who have their disease." He noted that patients
frequently spend months in the Clinical Center and that it becomes their home
away from home. Despite special amenities such as recreation rooms, a gym, and
a complete school, he said there was more that could be done.
Dr. Gallin expressed concern about two things in particular. "The stress
of chronic and severe illness is enormous, especially when far away from home
and too many families fracture. What is missing is a convenient place near the
hospital to take a break and get a moment of solitude, or take a nap, or get
a good night's sleep," he said. "And following intensive therapy,
patients and family members need a facility where they can transition to home.
They need a place where they can gain confidence in home care procedures in
order to gain independence from the hospital."
for NIH Board of Directors Chairman Dr. Charles Sanders (left) and NIH
Clinical Center Director Dr. John Gallin (right) with Mrs. Lily Safra
at The Edmond J. Safra Family Lodge dedication ceremony in the Senate
Offering thanks to Lily Safra and the Safra Foundation, as well as partners
in industry, for their generous gifts Dr. Gallin said the lodge would be a much
needed refuge to welcome and comfort patient caregivers. He predicts the facility
will become an important model for other clinical research centers.
NBC's Barbara Harrison moderated the event. The program also included Foundation
for NIH Board of Directors Chairman Dr. Charles Sanders, actor and patient advocate
Michael J. Fox (who also suffers from Parkinson's Disease), Ohio Congressman
Ralph Regula, Massachusetts Senator Edward Kennedy, and Dr. Patricia Grady,
director, National Institute of Nursing Research.
Grateful sentiment for the Safra donation was expressed: "This is what
the American people are all about, helping people help others. As people committed
to giving, Lily we thank you." Dr. Sanders.
"Mrs. Safra, the Edmond J. Safra Family Lodge will stand as a monument
for years. Those who will never know you will realize that your gift says there
are those who care."
"I want to thank Lily Safra for the work she does. Her gift here represents
the high standard she brings to everything she does." Mr. Fox.
Both Senator Kennedy and Dr. Grady agreed with Dr. Gallin that the Lodge might
become a model for others to follow. "Patients get better more quickly
when they have a family member nearby and their treatments are more effective,"
said Kennedy, adding that he hoped news of the Safra Family Lodge would soon
"echo forth, causing it to be replicated throughout the country and world."
"Patients are often discharged from a hospital without knowing how to
cope with their conditions," said Dr. Grady. "Their caregivers are
challenged, too. Caregivers need special knowledge to deal with many challenging
issues and attend to their own health as well. An NIH program to address these
issues for Safra Family Lodge residents would provide lasting benefits as they
return home and pick up their caregiving responsibilities again. The program
could become a model for other research and care organizations to follow."
The Edmond J. Safra Family Lodge is designed to provide "a home away from
home" on the NIH campus for caregivers of Clinical Center patients. Residents
will find amenities that reflect the comforts of home as well as the support
and companionship of others facing similar challenges. Groundbreaking for the
lodge will occur this summer with completion projected for 2003.
-by Dianne Needham
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Breaking ground for new Children's Inn wing
ground for the new wing of The Children's Inn are (left to right): John
Taylor, executive director, Merck Company Foundation; Lori Wiener, president,
Board of Directors, The ChildrenĂ•s Inn; four inn children residents and
a parent; NIH Acting Director Dr. Ruth Kirschstein; Tony Morella, inn
board member and congressional spouse; Mark Raabe, inn board member and
Merck rep; Chris Downey, inn board member; and NIH Clinical Center Director
Dr. John Gallin. Looking on from behind are inn board members and congressional
spouses Jane Gephardt (left) and Cecile Tauzin (right).
No longer will The Children's Inn have to say, "there is no room at The
Inn." That according to Lori Wiener, Ph.D., president, The Children's Inn
at NIH, is the reason a new wing will be built on to the existing facility.
"We often find ourselves overbooked, having to bump children back to hotels,"
she said. Wiener pointed out that during a 2-year period from the summers of
1998-2001, families were turned away on nearly 500 occasions due to space limitations.
On April 24, a formal groundbreaking ceremony was held to mark the start of
the wing's construction. Weiner remarked to those in attendance, "I'm not
sure if it is harder for the staff member who has to share the news or for the
child to hear the news that there's no room for them to stay at the inn. I think
you can all imagine how difficult it is to add this burden onto an already stressed
child and family."
Before moving forward with the inn's expansion data collection a review was
conducted on the inn's usage, institute protocols and future pediatric research
plans. Based on this data, the inn's Board of Directors decided that in order
to continue to support NIH pediatric research a new wing was justified. Twelve
years have gone by since the original groundbreaking for the Children's Inn.
When the wing opens in 2003, the Children's Inn will have the ability to provide
a "place like home" for another 18 seriously ill children and their
families during their visits to NIH, increasing the inn's capacity from 37 to
55 families. It will be a two-level addition that will blend and connect with
the original structure, and will include features on the ground level that will
enhance the overall homelike environment.
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Changing gears to fight AIDS
A trio of NIH security officers is looking for support in the
fight to find a cure for AIDS.
Left to right,
Kendrick Robinson, Dwayne Taylor and Ron West will participate in the
first-ever European AIDS Vaccine Ride. Although this is the first time
this event has been sponsored, similar events produced by Pallotta Team
Works, a private event enterprise based in California, have raised more
than $222 million and attracted more than124,000 people worldwide.
Officers Dwayne Taylor, Kendrick Robinson and Ron West will travel
to Europe next month where they will cycle 500 miles from Amsterdam to Paris
in the first annual European AIDS Vaccine Ride.
"This is a really good cause and we want to show people that
we're not just here working in the Clinical Center, but that we're in the community
trying to make a difference," said Taylor, captain of the NIH Team American
The European AIDS Vaccine Ride, sponsored by the firm, AOL Time
Warner, helps raise funds to benefit the work of scientists at the University
of California at Los Angeles AIDS Institute and the Emory Vaccine Center in
Atlanta, Ga. According to the European AIDS Vaccine Ride website, the organization
raises money to help free scientists from the tether of grant writing so that
they can remain in their laboratories, test new ideas and get to work immediately
on the approaches they feel are most promising.
Beginning June 30, the cyclists will ride for seven days through
the Netherlands, Belgium, and Germany. The tour will be completed in France.
Each team is asked to raise at least $5,000 for AIDS research. NIH Team American
Health aims to raise a minimum of $8,000. "We don't want to put a limit
on the maximum amount that we want to raise," said West, team co-captain.
"The sky is the limit."
The Centers for Disease Control and Prevention reports that there
were approximately 21.8 million HIV/AIDS-associated deaths worldwide through
2000. Of those, about 17.5 million were adults and 4.3 million were children
under the age of 15.
"We're not just doing this for AIDS research, but for cancer
and all the other diseases that have no cure yet," said West. "We
are doing this for the doctors and scientists, as well as the people they care
for." Currently, the team is seeking funding from NIH departments, local
businesses and the community for equipment and travel expenses. They are also
looking for more people to participate in the event. "We want others who
work in the Clinical Center and NIH to know that they have a voice and can make
a difference, too," said Robinson. "Little things and little people
can have a big voice in this world."
To support NIH Team American Health, contact Dwayne Taylor at
email@example.com, or call 202-321-4964.
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Laboratory Medicine receives high review marks
The College of American Pathologists (CAP) accredited the department of Laboratory
Medicine last month "with distinction."
The inspection, conducted every two years as part of the CAP's Commission on
Laboratory Accreditation, took place in February. Beginning this year, the commission
added the terms "With Distinction" to mark laboratories that passed
the rigorous criteria with especially high marks.
"We were very pleased at the outcome of the inspection," said Department
Director Dr. Thomas Fleisher. "The inspectors' comments were extraordinarily
complimentary to both our personnel and operations, as well as the excellence
of services being provided."
The Clinical Center's Department of Laboratory Medicine is one of more than
6,000 nationwide CAP-accredited laboratories. The accreditation program began
in the early 1960s and is recognized by the federal government as being equal
to, or more stringent than, its own inspection program. During the off year
between accreditation cycles the lab conducts a self-inspection comprised of
a "fairly extensive review of operations" said Fleisher.
Laboratory Manager Peggy Spina said the fact that peers conduct CAP inspections
and not regulators is a plus.
"We've opted to take part in the CAP program because it is an inspection
by our peersothers who actively run and work in similar environments.
These are people thoroughly familiar with all the issues and questions that
come up." As part of a reciprocal agreement, laboratory staff from the
Clinical Center also act as inspectors for other participating labs. CAP is
a medical society serving nearly 16,000 physician members and the laboratory
community throughout the world.
Caring is key: pediatric nursing program
wins journal award
are some members of the Nursing Pediatric Program of Care winning team:
Back row standing on bench (left to right): Donna Gwyer, Myra Woolery-Antill,
Brandi Hobbs, Kara Leddy, Debbie Rawson, Chantal Mouw, Marie Weskamp,
Shannon Kruk, Patty McGinley, Cindy Hahn; standing (left to right): Kathy
Obunse, Holly Villepique, Charlotte Bosmans, Kathleen Beville, Barb Corey,
Lt. Blondell Hill, David Draper, Linda Ellison, Kimberly Elenberg, Katie
Mullin; and front row (with knees bent, left to right): Christine Spalding,
Lt. Commander Felicia Andrews, and Donna Gaskins.
Children. Illness. Hospital. To some people, these words might
mean suffering. To the Pediatric Nursing Program of Care team nurses, they mean
commitment to a patient care model that treats patients as family, and colleagues
as partners. The team, a group of 61 nurses and two clinical research support
assistants, works on 9-West, 9-West Day Hospital, 13-West, and Outpatient-13.
Four clerical research support assistants also support the team. They have proven
that patients from many institutes can be cared for together, with excellence
and sensitivity without compromising quality care or clinical research.
This accomplishment has not gone unnoticed. Advance for Nurses,
a professional nursing journal, holds an annual Best Nursing Team competition
in recognition of superior nursing practice. This year, the Pediatric Nursing
Program of Care placed third in the Advance For Nurses Fourth Annual Best Nursing
Team 2002 Contest, Baltimore/Washington, D.C., metro area. Deborah Merke, M.D.,
the Clinical Center pediatrician for the program, is clearly impressed. "I
feel privileged to work with these nurses daily. They meet and exceed the challenge
of providing excellent patient care to children with varied needs, while providing
superior clinical research support to clinical investigators. It's wonderful
that their skills are being recognized."
The Advance for Nurses award caps many achievements by these dedicated
Development of "Teddy Bear Rules," guidelines in the form of
frequently asked questions that help patients move smoothly from unit to unit
and "Elephant Rules" that do the same for visitors to outpatient clinics
Coordinated admission planning between all pediatric areas
Expansion of the pediatric units' abilities to care for new institute
patients and protocols
Revising competencies to encompass the pediatric program
Providing support and expertise for pediatrics to the organization One
hallmark of the program is that patients, parents, and staff members have a
close relationship, almost like family, when they are together. Primary nurses
greet returning patients by their first names, an informality that patients
appreciate. The mother of a 7-year-old child who was discharged after a 9-month
hospitalization stay, speaks for many patients and their relatives when she
said that leaving the unit was "like leaving your family behind."
Staff members have also helped patients and their loved ones celebrate important
life eventsboth happy and sad.
To help staff cope with the grief that comes when patients die
the program holds an annual bereavement service to commemorate the lives of
children who have passed away.
Since 1998, the Nursing Pediatric Program of Care has met many
daunting patient care challenges: the merging of three inpatient pediatric units
to two, and the expansion of the pediatric day hospital to include patients
from all institutes. When the new Mark O. Hatfield Clinical Research Center
opens, the program will have merged all pediatric services into one unit and
a combined pediatric clinic. For pediatric patients and families, these changes
will be seamless. The Nursing Pediatric Program of Care will continue to exemplify
the can-do spirit that Clinical Center staffers make their daily credo.
"We are so proud of our team for winning this award. It is
so gratifying to see our nursing staff acknowledged for their expertise and
teamwork. They are truly a wonderful group to work with," says Barbara
Corey, nurse manager. Myra Woolery-Antill, program CNS agrees. "They make
it happen," she said.
-by Wendy Schubert
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protocol services office established
Dr. Robert B. Nussenblatt, chief, Laboratory of Immunology,
National Eye Institute (NEI), also became chief of the new NIH Office of Protocol
Services in January. "The conduct of clinical research on campus is something
I've been interested in for years," he said, "not only as a user,
but as scientific director of the NEI," a job he held until last year.
After discussing various approaches to clinical care with Clinical
Center Director Dr. John Gallin, Dr. Nussenblatt said it became clear to both
of them that they shared the same vision and goals. Dr. Gallin asked Dr. Nussenblatt
to take the lead position for the newly designed Office of Protocol Services,
formerly known as the Protocol Coordination Center.
"In theory, 20 percent of my time was to be devoted to
the new job," Dr. Nussenblatt laughed. "But the way it works out,
I spend five days a week in the Eye Institute and four days at the Clinical
Dr. Nussenblatt is enthusiastic about the progress that the
new Protocol Services effort is making. "A lot depends on the people
who help you, and there are some very creative and dedicated people here,"
he said. One of the most promising projects is a web-based protocol-writing
assistance tool currently known as ProtoType. Within a few months, the tool,
which formalizes and simplifies the writing of complex medical research protocols,
was created and then presented to the Medical Executive Committee. Designed
to be interactive, ProtoType offers both uniformity and flexibility to the
protocol writing process.
"It makes it easier for more junior investigators to follow
all the rules and regulations, while at the same time providing them with
common language that can be inserted into a template that has already been
developed and accepted," Dr. Nussenblatt explained.
The writer can easily and automatically insert procedural language
that exists and is explained in other protocols or, if preferred, the writer
can create entirely new language. Thus, the template can be as rigorous or
as flexible as desired.
As an added bonus, Dr. Nussenblatt believes ProtoType will result
in better patient safety and follow up because each protocol will be standardized
and allow principal investigators to "map" the progress of investigations
and track when patients should have certain tests.
Dr. Nussenblatt relies on his experience as an investigator
user to help make ProtoType work. In 1977, he came to NIH as a clinical associate
and knows what new researchers need. He also knows that under the present
system, investigators have to peruse paper charts and maintain their own records,
a time consuming and inefficient use of resources given today's computerized
"The ultimate goal," he said, "is that this
will be the first step to entering the Clinical Research Information System,
and that it will progress into a paperless operation." By year's end
Nussenblatt expects 20 to 25 percent of all protocols to be written using
ProtoType. The tracking of protocols, including the proper regulatory requirements
and reminding users of protocol renewals are among the other features that
will eventually be added to ProtoType to make it an even stronger protocol
"It will be an ongoing process, but I'm sure that as it
evolves, it will be like a living document. It will constantly develop as
conditions and regulations change." In the meantime, Dr. Nussenblatt
remains busy. "We're still in the honeymoon stage, but amazingly, we
haven't run into any major problems. I'm sure, though, that we'll see some
redundancies, problems and things we've forgotten, but to date, everyone's
been very positive about the new Office of Protocol Services as well as ProtoType."
-by John Iler
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Customer-friendly employee badges make
Some employees are now sporting the new NIH employee identification
badge. The new badge improves security at NIH, but according to Dr. Michele
Evans, Clinical Center safety officer, it will also be customer-friendly for
patients and their families.
"In short, the Clinical Center customized the government
badge so that it is easier to read and tells you who people are," said
The customized badge has a wide black horizontal stripe with
large white letters identifying some 20 employment designations. The letter
character font and colors are read easily from six feet awayĂ?a realistic distance
that helps patients when they are talking with their health care provider,
Clinical Center employees, as well as all medically privileged
and affiliated health care workers in the institutes, will have the black
stripe and a descriptive designation. All new NIH badges have a magnetic strip
that will, in the future, grant and record access to secured areas via a proximity
Employees also no longer need to go to Building 31 for their
new badge. For better employee convenience, portable kiosks or "badging
stations" will be set up throughout the Clinical Center. Workers in the
kiosks will access an employee's personal information from the NIH Enterprise
Directory (NED) only. Employees are encouraged to review their current NED
records with administrative officers to ensure their names and employee information
"Once you are at the kiosk, the badge workers cannot change
the information in the NED," Evans said. Each Institute has a NED coordinator
and employees should check with their administrative officer for assistance.
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New continental breakfast responds
to patient's needs
Recently it came to light in a discussion with Clinical Center
patients that there may be a patient need for a continental breakfast. Just
this month, the Nutrition Department began a pilot program that provides continental
breakfasts to patients each weekday from 7-10 a.m. During this pilot program
the times may be adjusted to accomodate patients' requests.
"Primarily, it's for patients who have early morning blood
work," said Alberta Bourn, chief of the Nutrition Department. "But
it's open to any patient who wants to take advantage of it."
Before implementing the program, patients complained those hours
of fasting before blood draws had made them hungry. They wanted some form
of nourishment once the procedures were over. Some patients, who had regular
early morning tests, had begun bringing bagged food. This came to Clinical
Center Director Dr. John Gallin's attention during a meeting of the Patient
Advisory Group and a decision was made to find a solution.
Now, each weekday morning in the Admissions area of Building
10, patients are treated to coffee and tea, hot chocolate, fruit juices, fresh
fruit, and an assortment of pastries, muffins, granola bars, and bagels.
"Patients are very enthusiastic in their response,"
said Bourn. "We've been told this was something that was very much needed
and we were happy to respond."
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Your Voice Counts- Take the CC Employee Survey
Influence the future of the Clinical Center
Participate in the 2002 Employee Survey
April 22 through May 20
Mailed to employees at home
Complete it promptly and return it in the postage-paid envelope
Race for the Cure
Join Team NIH in the 2002 Komen National Race for the Cure on Saturday, June
1. Those who registered at the Clinical Center in April may obtain their race
packets May 28-29 from 11 a.m.-2 p.m. at the second floor cafeteria. Registration
is available until race day. Find full race and registration details at http://www.nationalraceforthecure.org/registration.html
or contact Clinical Center reps: Pat Piringer, 301-402-2435, Dianne Needham,
firstname.lastname@example.org; and Georgi Cusack, 301-594-8128,
GM cancer conference
The 2002 General Motors Cancer Research Foundation Annual Scientific Conference
(GMCRF) will be held June 4-5 in Masur Auditorium. The NIH Director's Wednesday
Afternoon Lecture Series on June 5 will host presentations by each of the
2002 GMCRF winners. The event starts at 8:15 a.m. No registration. Visit http://www4.od.nih.gov/gmcrf,
or call 919-668-8018.
NIH Clinical Teacher's Award
The NIH Distinguished Clinical Teacher's Award is the highest honor bestowed
collectively on an NIH senior clinician, staff clinician or tenure-track/tenured
clinical investigator by the NIH clinical fellows. The deadline for nominees
for the next award is June 1.
Point of contact for further information is John Paul SanGiovanni, who can
be reached via e-mail at email@example.com.
Primary care updates
Join the Clinical Center Nursing Department for its third primary care update
seminar on June 19, 3-4 p.m. in Lipsett Amphitheater. Angelo Taveira-Dasilva,
M.D., Ph.D., Pulmonary Critical Care Medicine Branch, NHLBI, will present
the topic, "The Interpretation and Clinical Application of Pulmonary
Back to Top
Tanya C. Brown
writers: Dianne Needham, John Iler, Wendy Schubert
Center News, 6100 Executive Blvd., Suite 3C01, MSC 7511, National Institutes
of Health, Bethesda, MD 20892-7511. Tel: 301-496-2563. Fax: 301-402-2984.
Published monthly for CC employees by the Office of Clinical Center
Communications, Colleen Henrichsen, chief. News, article ideas, calendar
events, letters, and photographs are welcome. Deadline for submissions
is the second Monday of each month.
more information about the Clinical Center,
e-mail firstname.lastname@example.org, or call Clinical
Center Communications, 301-496-2563.
Grant Magnuson Clinical Center
National Institutes of Health
Bethesda, Maryland 20892-7511
The information on this page is archived and provided for reference purposes only.