Social Media & Medicine

Social Media & Medicine

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Description: At the new Houston Methodist Lung Center, we’re developing more effective lung-care solutions to offer every patient a better quality of life. Our multidisciplinary team of specialists combines their expertise with the newest technologies to create comprehensive, personalized treatment plans for those with complex breathing and respiratory disorders. Bringing advanced solutions in lung care to those who need it most.

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Contents:
NEWS OF THE TEXAS MEDICAL CENTER — VOLUME 3 / NUMBER 8 — SEPTEMBER 2016

Social Media
& Medicine
#ThatTimeWhenYouFoundACommunity

S E L ECT I V E P R E DATO R S, P. 5

»

A N ATOMY O F A WO R K DAY, P. 6

»

A N EW B O O K F R OM D R . P ET E R J. H OT EZ , P. 2 7

18 NEWModel Homes
Find your dream home today!

Easy access to
The Medical Center

New homes from the $280s!

Greenway
Galleria

Med Center

siennaplantation.com

Be

nd Pk w y

Live Well. Play Hard. Have Fun.
Fo

rt

Avanti . Darling . CalAtlantic . David Weekley . Gracepoint . Highland . J.Patrick
Meritage . Newmark . Partners in Building . Perry . Shea . Taylor Morrison
Sienna
Toll Brothers . Trendmaker . Triumph . Westin

Parkway at Hwy. 6

Downtown

OFFERING NEW OPTIONS
WHEN COMPLEX LUNG
CONDITIONS LEAVE FEW.
THAT’S THE DIFFERENCE
BETWEEN PRACTICING
MEDICINE AND LEADING IT.
At the new Houston Methodist Lung Center, we’re developing more
effective lung-care solutions to offer every patient a better quality of
life. Our multidisciplinary team of specialists combines their expertise
with the newest technologies to create comprehensive, personalized
treatment plans for those with complex breathing and respiratory disorders.
Bringing advanced solutions in lung care to those who need it most.
To learn more about our new lung center or to make an appointment,
visit houstonmethodist.org/lung-center or call 713.441.7779.

PRESIDENT’S PERSPECTIVE
TMC | PULSE
Vol. 3 No. 8
September 2016
President and Chief Executive Officer
Robert C. Robbins, M.D.
Vice President of Communications
Christen David
Pulse Editor
Maggie Galehouse
mgalehouse@tmc.edu
Digital News Editor
Shea Connelly
sconnelly@tmc.edu
Staff Writers
Alexandra Becker
Shanley Chien
Christine Hall
Britni N. Riley

ROBERT C. ROBBINS, M.D.
President and
Chief Executive Officer,
Texas Medical Center

2

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T

his month’s issue of Pulse considers the myriad ways social media is changing
the world of medicine.
We’ve known for some time that people with a community—people who have
meaningful human interactions—will do better in terms of health. They live longer.
They’re happier, whatever “happier” means. Actually, if you really dig deep, you’ll
find that happiness is often service to others. And so many of the anecdotes in the
“Social Media & Medicine” story bear this out. One woman who has struggled with
miscarriages shares personal stories on her blog. This act of sharing is therapeutic
for her and affirming to her readers who are also mourning babies.
Finding public and private forums to share detailed medical information has
become increasingly important to a public that wants better, faster answers about
doctors and possible treatments. This is particularly true of rare or orphan diseases.
Nobody’s making drugs for them because it’s not profitable. Nobody’s creating
medical devices for them because it’s not profitable. Patients are caught in this
conundrum, so they all band together on social media. They basically run a service
that steers patients away from hacks and toward doctors and researchers who offer
compassionate care and results.
Health providers are profoundly limited in the medical information they can
share, but regular people aren’t. Right now, you have to ask permission to get your
health data from the hospital, but eventually people will control their own data from
a device. Think about it. You know all about your car, but you don’t know all about
your own body. When you control and manage your own health data, you’ll probably
be healthier. You’ll say, “Wow, that’s my BMI? That’s my blood pressure? That’s my
cholesterol? I need to do something to get healthier.”
As medicine becomes more collaborative, social media platforms and smartphone apps are, quite literally, placing our health in our own hands. Just like
the human body, social media is a fascinating, ever-changing world of networks
and connectivity.

Photojournalist
Cody Duty
Advertising Coordinator
Meagan McCullough
NEWSROOM
713-791-8812
news@tmc.edu
ADVERTISING
713-791-8894
newsads@tmc.edu
DISTRIBUTION
713-791-6130
distribution@tmc.edu
TMC Pulse is a monthly publication of the
Texas Medical Center in Houston, Texas.
Permission from the editor is required to
reprint any material. Editorial/advertising
information is available upon request.
Texas Medical Center News is a member of Houston Press Club, American
Medical Writers Association, Association
of Healthcare Journalists, and American
Advertising Federation.

TABLE OF CONTENTS
8

Spotlight: Mark Burns

24

Spotlight: Gina Luna

32

Curated

35

Solutions

se p t e m b e r 2 0 1 6

36

Accolades

40

Calendar

12
Social Media & Medicine
.................................

Social media is part of a paradigm
shift in medicine, as patients swap
information, search for specialists,
and share stories.

18
A Fresh Start

.................................

An outreach program at The
University of Texas Health Science
Center at Houston School of Public
Health promotes healthy eating and
an active lifestyle.

22
Until 20
.................................

A documentary captures the life of
James Ragan.

28
Suite Life

.................................

An inside look at suites available at
some of the hospitals in the Texas
Medical Center.

on the cover
Original illustration
by Melinda Beck.

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3

WE HAVE THE

BRAINS
Our neuroscience program is led by the brightest,
most forward-thinking minds in medicine.
Led by the most esteemed physicians in the field of neuroscience, Memorial Hermann Mischer Neuroscience
Institute at the Texas Medical Center was the first of its kind in Texas and one of only a few institutions in the
country to fully integrate neurology, neurosurgery, neuroradiology and neurorehabilitation for the benefit of
our patients. The collective expertise of Memorial Hermann and McGovern Medical School at UTHealth
continues to bring the forefront of neuroscience to you.

Learn more at neuro.memorialhermann.org

4

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Selective Predators

Natural Killer T Cells Take Aim at Solid Tumors
By Shanley Chien

W

hile surgery, radiation therapy and chemotherapy are still considered mainstays in cancer
treatment, many oncologists and researchers are looking to immunotherapy as a way to treat cancer patients.
Baylor College of Medicine has announced a major
collaboration with biotech company Cell Medica, to
develop advanced technology for genetically engineered immune cells designed to treat solid tumors.
“This is really quite an important scientific
endeavor because we’re working with leading-edge
technology,” said Gregg Sando, chief executive officer
of the London-based Cell Medica, which has its U.S.
headquarters in the Texas Medical Center. “There are
current generation products that we could start using
now, but the focus is to take this technology to another
level and make it work much more effectively against
solid tumors.”
The partnership aims to accelerate the pre-clinical
research of Leonid Metelitsa, M.D., Ph.D., professor of
pediatrics – oncology at Baylor College of Medicine.
His research team is part of the Texas Children’s
Cancer Center and the Center for Cell and Gene
Therapy at Baylor and Texas Children’s Hospital.
Metelitsa investigated chimeric antigen receptor
(CAR)-modified natural killer T cells (NKT) as a safe
and effective platform for cancer treatment.
In exchange for Cell Medica’s expertise in cell
therapy manufacturing and commercialization, Baylor
provided the company with exclusive rights to the
proprietary NKT cell platform, five product candidates
and the option to license additional future products.
Clinical trials should begin within the next two years.
“This is an exciting development in the field of
cancer immunotherapy,” Metelitsa said. “The joint
program with Cell Medica provides a unique opportunity for me to see a real translation of my pre-clinical
research into clinical practice. Without Cell Medica’s
support, it would probably take us another five to
10 years to get there.”
In recent years, the scientific community has seen
considerable success harnessing the power of immune
cells, specifically T cells, against blood-related malignancies. This subtype of white blood cells is extracted
from the patient and genetically engineered with
CARs, which enable the T cells to identify antigens on
tumor cells. Doctors then grow the T cells in the laboratory and infuse patients with the new and improved
cells, boosting their immune systems with powerful
cancer-fighting ingredients.
Currently, CAR T cells are limited to patients with
blood cancers. But after moving to Baylor in 2009,
Metelitsa realized that the same process—adding

This is an exciting development in the field of immunotherapy. The joint program
with Cell Medica provides a
unique opportunity for me to
see a real translation of my
pre-clinical research into
clinical practice.
— LEONID METELITSA, M.D., PH.D.

CARs to specialized immune cells with natural antitumor properties—could treat a larger, unmet population: solid tumor patients. More than 90 percent of all
cancers are solid tumors, including breast, colon and
lung cancers common in adults, and neuroblastoma,
sarcomas and brain tumors in children, according
to Metelitsa.
“That’s why there is such a big race to develop therapies that could be effective for solid tumors,” he said.
Because solid tumors are equipped with a toxic,
protective shield that suppresses immune responses,
the body’s white blood cells cannot recognize or attack
the malignancy when it reaches the tumor, leaving the
patient at the cancer’s mercy.
Enter the natural killer T cells, highly selective
predators adept at attacking solid tumors. These white
blood cells have unique properties that give them the
natural ability to localize to the tumor site and disable
the tumor’s immunosuppressive response mechanism.
Like contemporary soldiers outfitted with
advanced armor and special homing devices, genetically engineering NKT cells—carrying CARs and
Interleukin 15, a protein that promotes NKT cell
growth—are highly effective in targeting the
tumor and fighting the toxic microenvironment
surrounding it.
Using this next-generation technology, Baylor and
Cell Medica will be able to target a range of cancers,
including small lung cancer, liver cancer and triple
negative breast cancer.
Baylor fielded multiple offers from companies
seeking to commercialize Metelitsa’s work before
accepting a second partnership with Cell Medica.
In 2011, Baylor worked with the biotech company on
T cell immunotherapy for cancers associated with the
Epstein-Barr virus.

A new partnership between Baylor College of Medicine and
biotech company Cell Medica taps into the pre-clinical
research of Leonid Metelitsa, M.D., Ph.D., professor of
pediatrics – oncology at Baylor College of Medicine.

“Since then, we’ve been able to accomplish a huge
amount together,” Sando said. “We’ve got the advantage of two really good players working together, we
were delighted to have the possibility of working with
Baylor College of Medicine in a new collaboration.”
Baylor’s team, led by Andrew Wooten and Michael
Dilling, Ph.D., helped structure the partnership. Under
the direction of a joint steering committee, Baylor will
oversee the first clinical trials. Meanwhile, Cell Medica
will develop a manufacturing strategy and, after the
first trials are complete, assume responsibility for
taking the therapy to market.
While the Baylor and Cell Medica collaboration
marks a pivotal point in the future of Metelitsa’s work,
the partnership heralds a significant adjustment in the
quest for a cancer cure.
“We are at the beginning of a paradigm shift in
the way we treat cancer, and Houston’s certainly going
to have an important role to play in how this immunotherapy industry shapes up in the years ahead,”
Sando said.

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5

Anatomy of a Workday
Sixteen hours with a first-year resident
By Alexandra Becker

Brennan Roper, M.D., a first-year orthopedic surgery resident.

We’re very lucky
to get to do what we do,
and sometimes we forget
that when we work really
long hours. We get to
help people and be an
important part of
their lives.
— BRENNAN ROPER, M.D.
First-year Orthopedic Surgery
Resident at McGovern Medical School

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ust shy of 5:30 a.m. on a recent
Wednesday, Brennan Roper, M.D.,
arrives at Memorial Hermann-Texas
Medical Center. The first-year resident in the department of Orthopedic
Surgery at McGovern Medical School at
UTHealth lives less than five minutes
from the hospital. He set his alarm for
4 a.m. so he would have time to shower,
review anatomy books, and make his
daily breakfast: an egg and turkey sandwich on a toasted English muffin.
On this particular day, he will not
touch food for another 12 hours.
By 5:40 a.m. Roper is bedside, speaking with a patient from his previous
day’s rounds. Twenty minutes later,
the team convenes for their morning

meeting. Residents, nurses and physician assistants are always joined by the
on-call attending physicians to review
the day’s case list and to discuss diagnoses, doses and expected outcomes.
The human body contains a mighty
206 bones, but there are infinitely more
ways to break them. Roper ticks off a list
of likely sources: monkey bars, excited
dogs, contact sports, slippery tile,
upturned rugs, rollerblades, ATVs, cars,
baseball bats, and guns. People fall, trip
and crash. And the orthopedic trauma
team at the nation’s busiest Level I
trauma center puts them back together.

A Bloody, Mangled Hand

At 7 a.m. Roper hurries to McGovern

Medical School to attend a lecture led
by Kyle Woerner, M.D., an assistant
professor in the department of orthopedic surgery. Woerner, who specializes
in the upper extremities, begins his
PowerPoint with a close-up photo of a
bloody, mangled hand.
“Can anyone tell if the flexor tendons were cut here?” he asks.
“Definitely,” a student calls out.
Woerner smiles. “Look carefully,” he
says. “Do you see the cascade? All the
fingers are still slightly flexed.”
What follows is an animated
overview of surface anatomy (bones,
tendons, nerves), common pain points
(distal radius metaphysis, anatomical snuffbox, hamate hook, dorsal

triquetrum), and range of motion
diagnostics (pronation/supination,
wrist flexion/extension, radial/ulnar
deviation, digital motion, the forming
of a full fist).
“Be curious little kids,” Woerner
says to the class. “You don’t want to
miss anything.”
After the lecture, Roper joins
members of his team in the operating
room to clean infected hardware in a
leg. By 9:15 a.m. he’s in the emergency
center at the Memorial Hermann Red
Duke Trauma Institute rounding on a
list of new patients. His typical questions: “Do you smoke? Are you feeling
sick? Are you having any problems with
your heart? Fevers? Chills?” He often
tells his patients: “You’ve been through
a lot. We are going to take great care
of you.” To babies, he tries to speak
softly, soothingly: “Hi, sweetheart. I’m
sorry, sweetheart.”

Bone Phone

As a first-year resident and intern,
Roper gets some of the most monotonous jobs. Glued to his hip is the
so-called “bone phone,” dialed for all
ortho-related requests. His days are
constantly interrupted by its ring and
he often adds names of patients to a
list he keeps in the back pocket of his
scrubs. The most common ask is for
surgery consent—a tedious task but an
important one.
At lunchtime, Roper chooses to skip
the cafeteria to input patient notes into
the medical records system. He knows
the inside of Memorial Hermann as well
as he knows the intricate anatomy of a
hand. Even though his residency has
just started, the campus is familiar: he
studied here as part of his curriculum
at McGovern Medical School, his top
choice after attending The University of
Texas at Austin for undergrad.
Roper always enjoyed playing sports
and appreciated the intricacies of the
human body, but he didn’t always plan
on being a doctor. After some trying
family medical experiences and surgeries of his own, however, he set his sights
on becoming a physician and never
looked back. At times he questioned
whether he had what it took to really
make it to medical school and beyond,
but with constant encouragement from
professors, he kept pushing.
“I’ve had a lot of great mentors and
influences in my life all along the way
that have helped guide me and get me

to this point,” Roper said. “I wouldn’t be
here without them."

Being Thankful

At 5 p.m., followed by a medical student
who has been assigned to shadow him,
Roper walks back to the classroom to
attend the weekly fracture conference,
where residents and faculty eat pizza,
present X-rays and ask questions. It
lasts until his 7 p.m. team meeting.
Everything is a learning opportunity, a charge to be better.
There is a strict rule that says residents may work no more than 80 hours
a week. Even that might seem excessive, but for new doctors, excited about
their first jobs, the cap can be frustrating. Roper is 26. When asked about
exhaustion and burnout, he says he
tries to focus on being thankful instead.
“We’re very lucky to get to do what
we do, and sometimes we forget that
when we work really long hours,” he
explains. “We get to help people and
be an important part of their lives.
Not everybody gets an opportunity
like that.”
After the evening meeting, Roper
heads back to the ER to complete a few
more patient consults and write a few
more patient notes. After a 16-hour
workday, his final stop is home, where
an anatomy book waits, open, on the
kitchen counter.

Top: Brennan Roper, M.D., working with a patient. Middle: Roper typing notes. Bottom: Roper heading off to make rounds.

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‘Balanced Rock,’ Big Bend National Park, Texas. Credit: Copyright © Mark Burns – All Rights Reserved

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SPOTLIGHT

PHOTOGRAPHER MARK BURNS crisscrossed the United States for
four-and-a-half years to capture images of all 59 national parks. The native
Houstonian planned ahead, paying close attention to the weather, the tides,
and the position of the sun and the moon. During a walk through his
exhibit at the Houston Museum of Natural Science with Pulse reporter
Britni N. Riley, Burns reflected on his journey.

Q | What inspired you to do
this project?

A | 2016 marks the centennial anniversary of the National Park Service. It’s
a special time to reflect back on the
100 years we have had, but it is also
a time to look forward to the next
100 years and what the plan is going
to be to continue to protect the parks
and keep them special and sacred.

Q | How did you prepare for

your trips?
A | Weather was a huge part of my project so I would print out sheets of paper
with sunrise and sunset times, moonrise and moonset times. I would keep
a book with me to know where the sun
and moon would be at all times. I also
included tide tables when I was at parks
near water. I also made and canceled a
lot of hotel reservations, depending on
weather patterns that I was following.

Q | How did you get to all of the parks?
A | I drove 160,000 miles in my Toyota

with 50 lb. packs on your back, it is kind
of tough to walk and hike. Carrying
around my camera equipment gave
me a bit of a handicap and I realized
I had to slow down. I told people I was
a turtle; I would go low and slow.

Q | Did you have specific shots in mind
when you went to each park, or did you
let the parks dictate the images?
A | It was all about captured moments
for me, which meant a lot of waiting.
It wasn’t just running around taking
pictures of everything, it was spending
a few days looking for a composition
that I really liked and then just waiting
for the composition or the atmosphere
or the time of day that I liked. That
being said, not all of the shots worked
out. I went back to some of the parks
three or four times trying to get clouds
or atmosphere or fog.

Q | Why aren’t the photos in color?
A | I did the project in black and white

FJ Cruiser to every national park in
the lower 48 and flew out of Alaska and
Hawaii to get to the rest of the parks.

as a sort of timeless bridge back to
the past century—so they would look
similar to pictures done around 1916 or
the ’20s or ’30s.

Q | How did this project affect

Q | Let’s get technical for a minute.

you physically?
A | I am 57 now, but when you are
55 and you’re at 13,000 feet elevation

What kind of cameras did you use?

A | I started off the project using a

4x5 film field camera, which is a large

format field camera where you put the
dark cloth over your head. I love that
kind of photography; that’s what I grew
up studying and learning. But after a
few months, it became rapidly evident
that it was too time-consuming. So I
switched over exclusively to digital
and I settled on the Nikon D800. The
camera bodies were light enough that
I could pack and carry two with me,
along with a couple of lenses and filters
that I needed.

Mark Burns shooting Grand Canyon
National Park. Credit: Craig Robbins

Q | What was the most unusual park

“ The National Parks Photography
Project,” by Mark Burns

A | One of the most different parks I

WHEN:

Through Sept. 28

WHERE:

Houston Museum of
Natural Science,
5555 Hermann Park Dr.

you visited?

visited was in American Samoa, way
out in the Pacific Islands. One of the
mammals they protect is the fruit bat.
They fly all over the park and they are
huge—like Chihuahuas with bat wings.

Q | Where was the most remote
location you visited?

A | Wrangell—St. Elias in Alaska, which

is the largest park in the national park
system. It is about as big as the state of
Maryland. This was one of the few that
was done from an airplane. We had the
doors off of the little bush plane. If you
landed or you walked or you hiked, you
wouldn’t be able to capture the scale. I
wanted to do it from the air to show the
miles and miles of glacier.
continued

TICKETS: Free with museum
admission of $25 (adults);
$15 (seniors, college students and children 3-11);
$8 (military)
INFO:

713-639-4629 or
hmns.org

I drove 160,000 miles in my Toyota FJ Cruiser
to every national park in the lower 48 and flew out of
Alaska and Hawaii to get to the rest of the parks.

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9

‘Rialto Beach Seastacks,’ Olympic National Park, Washington. Credit: Copyright © Mark Burns – All Rights Reserved

Q | What did you learn from

this project?
A | It was a life-changing experience.
I always had an appreciation for the
outdoors and nature, but now I have just
a really deep connection and appreciation for the earth and all of the cycles.
I didn’t believe in global warming
before I started this project, but there is
definitely a warming cycle happening
and I think seeing how many glaciers
have melted in the past 100 years is a
reminder that we all need to be more
aware of our responsibility to protect
this land.

Q | What do you hope visitors will take
away from your exhibit?

A | Nature is a great soother and healer
and, in a lot of ways, it is a total contrast
from the normal busy world of iPhones
and schedules and appointments.

Nature is a great soother and healer and, in a lot of ways, it is a total contrast
from the normal busy world of iPhones and schedules and appointments.

When you are able to go into a park and
spend a few days in nature with that
sort of solitude, it is just a great therapeutic experience. I want to increase
awareness of what the parks offer and I
want people to be aware of the value of
protecting natural lands.

Q | How does it feel to have
your work on display in a major
Houston museum?
A | It’s almost surreal because when
I was growing up here in Houston,
we would come on field trips to the
Houston Museum of Natural Science.
And now, today, I see kids from all over

being bussed into the museum and they
are coming to see my photographs! So
it is a huge honor.

Q | What is your next project?
A | My next project will start this fall in
the Grand Canyon, which celebrates its
100th anniversary as a national park in
2019. I will do both black and white and
color, and I’ll be using different sizes of
cameras to get an in-depth look at all
angles of the canyon.

Mark Burns, Yellowstone National Park,
Wyoming. Credit: Craig Robbins
10

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Top: ‘Wotan’s Throne Sunset,’ Grand Canyon National Park, Arizona. Below: ‘Saguaro Vista,’ Saguaro National Park, Arizona. Credit: Copyright © Mark Burns – All Rights Reserved
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11

W

hen Christina Harper’s daughter was an infant,
surgeons cut a hole through the front of her neck and
into her windpipe. By inserting a breathing tube in
the tiny opening, they gave her lungs quick, easy access to air.
Hours later, Harper joined the Facebook group “Moms of
Trach Babies.”
“That resource was a godsend for me,” said Harper, who lives
in Orange County, Calif. “The group had all different mothers
from all different stages of life—new trach moms, older trach
moms, kids who have had their trach tubes since birth and are now
in their teens. Without them, I would have had no clue what to do,
how to do it or what meant what.”
Her daughter Harlow lived with the tracheostomy tube for
about two years, at which point Harper began asking when it
could be removed. It was
limiting Harlow’s development,
impeding her ability to eat and
speak, and no longer seemed
medically necessary. When
the doctor said it was too soon,
Harper reached out to multiple specialists in Southern
California, all of whom told her
the same thing: not until the
age of five.

Harlow Harper
Credit: Courtesy photo

12

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» p u ls e | sept ember 20 1 6

“That was disheartening, but I’m persistent and I’m her
advocate,” Harper said. “I went back to my trach moms group
and a lot of them were having success doing a procedure called
LTR. They were having this done as early as 18 months old, and
here we are, two years old and beyond, and people are still telling
us ‘no.’”
With laryngotracheal reconstruction, or LTR, grafts are taken
from either the ribs or thyroid cartilage of the larynx and placed
on the walls of the airways, ultimately allowing for removal of the
tracheostomy tube and restoration of airflow in the windpipe.
Through Facebook conversations and Google searches, Harper
found Dr. Deepak Mehta, otolaryngologist at Texas Children’s
Hospital and associate professor of otolaryngology at Baylor
College of Medicine. After one visit to Houston, Harlow—who
Mehta described as “the perfect candidate”—was scheduled
for surgery.
“I seriously owe it all to this group of women,” Harper said.
“Social media has saved me from having a nervous breakdown
because I have someone to speak to that truly understands what
I’m going through.”
Today, Harper is paying it forward, regularly monitoring her
Facebook group for moms like her and for the opportunity to
share Dr. Mehta’s information. As for Harlow, her tiny voice can
be heard filling up rooms and cars and grocery store aisles.
She loves to sing.

Only Connect
Now more than ever, the human race is intertwined. We communicate on Facebook, blogs, Instagram, Twitter. We sit late in front of
computers, stare at our smartphones, download social media apps.
Our exchanges are instantaneous, global, ubiquitous.
According to a recent study by Pew Research Center, nearly
two-thirds of American adults use social networking sites. This is
powerful, because in a world where mass shootings occur almost
weekly and everything from our morning lattes to our fathers’
strokes are made public via Instagram and Facebook, we are
finding less solitude and more solidarity. We have created new
communities and, through them, found support. Nowhere is this
more meaningful than in the vast world of medicine.
Sharing information can be therapeutic for individuals faced
with traumatic experiences, challenging diagnoses, or controversial treatments. Popular health-related websites now considered
mainstays, including CaringBridge, grew out of a need to share
one patient’s sensitive health information with a close circle of
family and friends. And for a patient with a rare genetic condition—so rare that it has only just been named and doctors are still
in the process of gathering and crunching data—finding others
with the same diagnosis will help close the distance between
effective treatments and, hopefully, a cure.
According to Pew, seven in 10 adult internet users say they
have searched online for information about a range of health
issues, including specific diseases and treatments. But that’s just
the tip of the iceberg. Patients turn to social media to seek out
specialists, swap personal medical information, and, when
necessary, grieve.

About a Blog
Nothing in me wants to write this post.
So begins a blog entry from Oct. 16, 2015. Written by Casey
Wiegand, it details the heartbreak behind three miscarriages.
I honestly have dreaded typing these words. Dreaded in a way
facing the feelings, dreaded the judgments that will be out there
from people who don’t know all the details. But I feel a constant
soft nudge to be the voice for those in my shoes… So here I am raw
and stumbling out to share more of my story… humbled again and
putting out my life and my hurt for those of you who understand.
Those of you who scroll through your feeds every day and rejoice at
the new lives growing in all the beautiful bellies but weeping for the
lives that keep getting lost in your own.
Wiegand, who initially set up her popular site, CaseyLeigh, to
update family while her son was in the NICU, quickly realized the
value of connecting to other families with similar struggles.
“I stumbled upon this whole community of bloggers and I
thought, ‘I want to build something like that for my family,’” she
said. “Originally I thought it was such a sweet way to capture our
life and be intentional about it. Then when my second child was
about 10 months old, we got pregnant and we lost that baby. I had
already been using this space to talk about our life, so it was really
natural for me to process that grief here.”
Wiegand’s posts are full of unedited emotion; they are honest
and sometimes heartbreaking to read. On Instagram she has
more than 106,000 followers, and her carefully curated posts
complement her blog and direct traffic to her site. She’s shared her

A selfie posted by Casey Wiegand on her popular blog, CaseyLeigh.
Credit: Courtesy photo

emotional, spiritual and medical journey through three miscarriages. Happily, she’s also shared the joy of two additional births.
Her youngest daughter was born in August.
“It has been amazing how many women connected with my
story,” Wiegand said. “It made me feel so much less alone because
as I was hurting and processing, I was suddenly connecting with
people all over the world who had walked through that and who
had felt similar.”
After her miscarriages, Wiegand set out to uncover a cause.
Through blood tests and genetic evaluations, she was diagnosed
with methylenetetrahydrofolate reductase (MTHFR) deficiency,
a mutation associated with elevated levels of homocysteine and
lower levels of folate in the body. She has written about it on
her blog—from her diagnosis to treatments to the name of her
doctor. That’s an important point, because not everyone in the
medical community agrees that mutations in the MTHFR gene
are associated with recurrent miscarriages, so not everyone tests
for it. Wiegand’s public disclosure of her own medical journey
places her in the role of advocate, empowering other women
struggling with loss to seek out testing, ask specific questions,
and demand answers.

Being able to connect with your
friends and family no matter where they
are, whether they’re across the street or
around the world, is healing.
— SONA MEHRING
Founder and Chief Ambassador of CaringBridge

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The Mitchell and Hanners families, who connected via Lace Mitchell’s Facebook group for individuals affected by Schaaf-Yang Syndrome, enjoy a day
together at The Houston Zoo.

Sona Mehring, founder and chief ambassador of CaringBridge, walks with Amy Townsend, a CaringBridge user who set up her site in 2014 after she was
diagnosed with breast cancer. “Writing posts after my appointments always helped me process everything,” Townsend said. “It would allow me to get
all of the details down and really think through what was happening in my life before I shared it with everybody. It was amazing to me, but nearly every
one of my posts started as an update and ended as a prayer.”

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“It honestly makes me feel better thinking, ‘OK, we went
through all that heartache, but maybe we can help someone else,’”
Wiegand said. “It gives you a peace in your heart.”

Building Bridges
On June 7, 1997, nearly seven years before the launch of Facebook,
Sona Mehring set up a social media platform, although she didn’t
know it at the time. She had been asked by two close friends to
share health updates about their daughter Brighid, born prematurely that day. After two emotional phone calls that lasted
45 minutes each, an exhausted Mehring decided there had to
be a better way, and so CaringBridge.org came to life.
“It certainly eased the burden of telling people what was going
on,” Mehring explained, “but the wow factor was the ability to
bring together that community when everyone needed it most.”
Today, more than half a million sites have been created on
CaringBridge. Advertised exclusively through word of mouth, the
non-profit’s free, user-friendly appeal lies in its capacity to rally
support for a loved one while sharing important, often difficult,
health news. Users create a site and share their unique link with
friends and family; they set their account to be as private or as
public as they feel comfortable and update with news and photos
as often as they wish. In turn, people visit the page for new information, posting well-wishes and words of encouragement. Each
page is a virtual living room, a place to go for comfort and kinship.
“Being able to connect with your friends and family no matter
where they are, whether they’re across the street or around the
world, is healing,” Mehring said.
That’s not just a hunch. Numerous studies have shown that
social ties enrich lives and play crucial roles in health and
longevity. A 2010 study published in the journal Plos Medicine
found that a lack of connections can be so detrimental to health
that individuals with strong social relationships had a nearly
50 percent increased likelihood of survival compared to
those without.
Mehring recounted a story about a woman who called to tell
her that CaringBridge helped save her husband’s life after he’d
been diagnosed with cancer.
“He had basically given up and was in a cycle of despair,”
Mehring recalled. “One day, his wife sat him down in front of
the computer and he spent the next three hours reading the
CaringBridge site she created for him. He read not only what
she had written, but what other people had written. From that
moment, his despair turned to hope and his whole attitude and
story turned around.”
Six years later, Mehring was attending a conference when a
couple came up and introduced themselves.
“There he was,” she said.

13 Years
When Michael Mitchell was born, his mother knew immediately
that something was wrong. Just three years earlier, her firstborn,
a daughter, died from a mysterious condition characterized by
low muscle tone and contracted fingers—symptoms undeniably
present in her son. Physicians ran test after test, but all came back
inconclusive. The ambiguity was wrenching. Without a diagnosis,
there was no hope for treatment. Without an explanation, nobody
could tell the Mitchells what the future might hold. Was this a

progressive disease? What sort of therapy might be most beneficial to Michael? What was his projected lifespan?
“When Michael was younger, we were told that he would not
walk, he would not crawl, he would not sit up, he would not, would
not, would not,” his mother, Lace Mitchell, recalled.
And yet, walk Michael did. Without anyone to turn to, Lace and
her husband forged their own way, enrolling Michael in various
forms of therapy, supporting him and pushing him to try his best,
all the while not knowing what his condition was or what they
could expect.
This went on for 13 years.
What finally cracked Michael’s case was the development of
two genetic tests, considered game-changers in the field: chromosomal microarray analysis (CMA) and whole exome sequencing.
Before these tests, only 10 percent of rare genetic conditions were
diagnosed. After, that number climbed to nearly 50 percent.
Geneticist Christian Schaaf, M.D., Ph.D., who works as an
investigator at the Jan and Dan Duncan Neurological Research
Institute at Texas Children’s Hospital and as an assistant professor in the Department of Molecular and Human Genetics at
Baylor, explained the value of the tests through analogy: If you
think of the genome as a library, then the CMA provides you with
an inventory of the library; it looks at the number of shelves
(read: chromosomes), and counts the number of books on the
shelves to ensure there are no missing or extra copies. The exome
sequencing test takes it a step further and actually opens the
books to check for misspellings (or mutations) in the expressed
genes in the genome.
In Michael Mitchell’s case, the tests revealed a mutation
on the MAGEL2 gene. But here’s the rub: until another patient
was identified with the same genetic mutation and the same
observable characteristics, it was all hypothesis, and MAGEL2
was just considered a “candidate gene,” a potential cause for
Michael’s condition.
“Nobody has a perfect genetic code; we all have thousands of
misspellings or mutations,” Schaaf explained. “So the challenge is
not so much in generating the data, but in the interpretation.”
The key for these rare genetic conditions is finding another
patient with not only the same mutation but similar physical
symptoms as well, thus verifying suspicions that it is that exact
mutation on that exact gene that is causing those exact symptoms. Interestingly, many individuals turn to social media to find a
match when a diagnosis cannot be made after testing. Armed with
a handful of “candidate genes,” they take matters into their own
hands, posting their genetic results and details of the condition in

When Michael was younger, we were
told that he would not walk, he would not
crawl, he would not sit up, he would not,
would not, would not.
— LACE MITCHELL
Michael’s mother

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hopes that someone, somewhere, might recognize it.
Michael Mitchell was lucky. He was referred to Schaaf by a
colleague just as Schaaf had linked four other individuals with the
MAGEL2 mutation, each of them exhibiting the same physical
characteristics. Shortly thereafter, Michael became the fifth person in the world to be diagnosed with Schaaf-Yang Syndrome.

Finding Your Tribe
The importance of a diagnosis cannot be overstated. Families
dealing with rare genetic disorders are plagued by frustration,
uncertainty, guilt and isolation. By obtaining a name, they gain
an answer, and that simple distinction is empowering. However,
because many of these conditions are so rare and, in some cases,
brand new, physicians are often unable to offer anything comforting or concrete to families seeking information. So families go in
search themselves.
“I think there’s a paradigm shift in medicine and science in
general,” Schaaf said. “The paternalistic approach has really come
to an end. It’s not just us as physicians telling people what to do.
It’s more of a team effort now.”
When Lace Mitchell scrolled the internet looking for a support
group for moms of kids with Schaaf-Yang Syndrome, nothing
came up. So she decided to create one.
“God put it in my heart and I started the page without a lot of
information, just with the idea that this was for families to connect,” she said.
It has morphed into a main page, intended primarily for

I hear it over and over again, how
places like Facebook are a lifeline
because it is a way to connect with
other families.
— CHRISTIAN SCHAAF, M.D., PH.D.
Investigator at the Jan and Dan Duncan Neurological
Research Institute at Texas Children’s Hospital

general information about Schaaf-Yang and current clinical
studies, but it is supplemented by a private Facebook group where
parents communicate more openly. Like Harper’s “Moms of Trach
Babies” group, these parents use the private page to post personal
photos, share the nitty gritty details of their experiences, and seek
advice. Today, there are close to 60 members. For a rare and newly
identified genetic disorder, that is considered robust. In fact, for
many of the members, it was finding the Facebook group that
helped them make a diagnosis in the first place.
Lace Mitchell is active on the page, updating it frequently and
openly sharing her son’s experiences with the community. It is the
exact kind of support she had yearned for all those years.
Michael has exceeded all expectations, and it’s inspiring to
the families in the Facebook group to hear his story: how he loves

Christian Schaaf, M.D., Ph.D., investigator at the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital and assistant
professor in the Department of Molecular and Human Genetics at Baylor College of Medicine, in his lab.

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to ride horses and is proficient in sign language, how he can be
smart and funny at the same time. He is a whiz at Houston landmarks—even zooming down I-45 in a car, he can tell you exactly
where he is and, most importantly, where the Target is located.
“I hear it over and over again, how places like Facebook are a
lifeline because it is a way to connect with other families,” Schaaf
said. “One of the families I work with calls it her tribe. She mentioned that the other day, she was at the store and someone made a
comment about her children, like, ‘What did she do? She probably
drank or did drugs during pregnancy to cause this.’ She said, ‘I’ve
had these situations a few times over the years and this time, for
the first time, I could laugh about it because now I have an answer
and I know for myself what caused it, and that it wasn’t me. And I
have my tribe.’”

Going Viral
Many health care institutions are embracing social media to
help their research and patient care. Digital platforms such as
MyGene2, for example, encourage individuals to input their
genetic information into an online database with hopes of building a large, searchable information system.
“I think, increasingly, we’re recognizing that one of the
big obstacles to gene discovery has been sharing data,” said
Michael Bamshad, M.D., pediatrician and human geneticist at
the University of Washington and co-founder, along with Jessica
Chong, Ph.D., of MyGene2.
While clinicians and researchers can create public profiles
as well, they are bound by ethics (specifically, the International
Review Board’s common rule) and by HIPAA regulations, which
are designed to protect the security and privacy of health information. So they can’t share nearly as much information as a patient’s
family can. A family can post detailed health information, including all of their candidate genes, genetic test results and genetic
data. They can share as much as they want, and the more they
share, the more likely it is that matches will be made.
To moms who are ready to advocate for their children, to
parents who are determined to find answers, to anyone struggling
with new diagnoses, grief or loss, the sharing of knowledge and of
personal health stories can be invaluable.
It can also be lucrative.
Two years ago, the Ice Bucket Challenge went viral on social
media. Participants posted photos and videos of buckets of ice
being dumped on their heads—all to encourage donations for

research related to amyotrophic lateral sclerosis, or ALS, an
incurable neurodegenerative disease that affects nerve cells
in the brain and the spinal cord. Recently, the ALS Association
announced that funding from the challenge—which amassed millions—directly aided in the discovery of a newly identified gene,
NEK1, now considered one of the most common genes responsible for ALS. This breakthrough will help researchers develop
therapies for the devastating disease.
And just this past May, Humans of New York, a blog-turnedsocial-media-force with more than 20 million followers, published
a series of short narratives highlighting patients, families, caregivers and clinicians at New York’s Memorial Sloan Kettering Cancer
Center. The stories were part of a fundraising campaign.
In the introductory Instagram post on May 5, Humans of
New York creator Brandon Stanton wrote: “Obviously, these are
not going to be easy stories to read. These are war stories. The
treatment of cancer can be nearly as violent as the condition itself,
and even the doctors will frame their efforts in terms of warfare.
But the fight against pediatric cancer is uniquely tragic because
the battlefield is the body of a child. … So yes, these are war stories. But this is also the story of humanity’s bold response to the
greatest injustice of nature. And as we learn these stories, we’ll be
raising money to play our own small part in the war.”
The initial goal was to raise $1 million for the Center. By
May 20, the last day of fundraising, Stanton announced that
90,000 readers had donated nearly $3.4 million. He gushed:
“You are the most caring community of people on the internet.”

I think, increasingly, we’re recognizing that one of the big obstacles to gene
discovery has been sharing data.
— MICHAEL BAMSHAD, M.D.
Pediatrician and Research Geneticist at the
University of Washington and Co-founder of MyGene2
Michael Mitchell, far right, with the Hanners family at The Houston Zoo.

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17

A Fresh Start

HE/AL, a program at The University of Texas Health Science Center at Houston
School of Public Health, helps expectant mothers eat, cook and live healthy
B y B r i t n i N. R i l e y

S

Top: Expectant mothers and their families meet at The
University of Texas Heath Science Center at Houston School
of Public Health to discuss healthy options for eating and
exercise. Bottom: HE/AL nutritionists prepared a butternut
squash macaroni and cheese with turkey bacon, and a salad
for the weekly meeting.

pring was a bittersweet season for April Fuentes
and her husband. When they found out they were
expecting their second child—a girl, in November—
they rejoiced. But in May, the couple learned that
Fuentes’ father had stage four colon cancer, a diagnosis that would change more than one life.
“After my father was diagnosed, my parents
watched Forks Over Knives and they told me to watch
it,” Fuentes said. “It’s really eye-opening because it
shows people who have diabetes and high blood pressure, and these people start only eating plant-based
foods and their problems start going away. They don’t
need to take diabetes medicine anymore.”
After watching the film, which explores the idea
that many degenerative diseases can be controlled by
rejecting processed and animal-based foods, Fuentes
and her family decided to get healthy together.

Community health workers are sort of the bridge between the
healthcare industry and the families because they speak the language
of the families and they are trained in health education.
— SHREELA SHARMA, PH.D.
Director of HE/AL at The University of Texas Health Science Center at Houston School of Public Health

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It was not as easy as she had hoped.
“I was really nervous about cooking healthier food,”
she said. “Living in Houston, it is a lot easier to stop at
a taco stand or pick up a burger for dinner.”
At a routine check-up with her doctors, Darby
learned about HE/AL. Healthy Eating, Active Living
is a community health initiative started by Shreela
Sharma, Ph.D., of The University of Texas Health
Science Center at Houston School of Public Health, in
collaboration with Phil Nader, M.D., a pediatrician in
San Diego, Calif. For three years, Sharma and Nader
have been working to create a clinic and community
dedicated to solving health-related issues facing the
local low-income population, including obesity and
diabetes. In addition to learning about nutrition and
exercise, participants take home fresh food from the
Houston Food Bank after each meeting.
“Community health workers are sort of the bridge
between the health care industry and the families,
because they speak the language of the families
and they are trained in health education,” Sharma
explained. “The program creates a feedback loop back
to the clinic and provider about what is going on with
the patient when they attend this program.”
The six-week program Fuentes attends is geared
toward expectant mothers in their first and second
trimesters, but also encourages partners, friends and

I was really nervous about
cooking healthier food. Living in
Houston, it is a lot easier to stop
at a taco stand or pick up a burger
for dinner.
— APRIL FUENTES
HE/AL Participant

family of the mothers-to-be to participate. HE/AL also
offers a program for new mothers and their infants
that focuses on healthy goals and activities that can
be incorporated into daily routines.
Weekly meetings last 90 minutes.
“When we first started HE/AL, I set two goals for
myself,” Fuentes said. “One was to eat three servings
of fruits and vegetables every day, and the other was
to make healthier choices for myself. So instead of the
fried chicken, it’s the salad or the chicken breast.”
During the weekly meeting, participants have a
chance to share their stories and struggles, watch a
cooking demonstration with fresh ingredients chosen
by HE/AL dietitians, and exercise. Participants learn
about the kinds of exercise that are safe during pregnancy and beneficial after babies are born, including
yoga, aerobics, and exercises with resistance bands.
All participants are encouraged to try the movements
and techniques at home.
Esco Zepeda, HE/AL community health worker,
helps HE/AL participants with day-to-day questions—including fielding 10 p.m. phone calls about
how to make whole-wheat tortillas—and also serves as
the fitness instructor. During a recent class, Zepeda
moved through different aerobic poses and made sure
everyone understood the benefits of the movements
and how to have fun doing them.
“This is not a class, this is more of a facilitated
conversation,” Zepeda explained. “We believe that a
community will make a change when the information

April Fuentes, a HE/AL participant, shopping for fresh produce.

is coming from them, not when it is coming from
someone they don’t know in the health industry. Little
by little, we are just delivering information—like, try
this new recipe, this new fruit, or this new vegetable.”
Each week the HE/AL program directors plan a
healthy menu for the women, based on what is available at the Houston Food Bank.
“The first dish we had while I was in the class was
the pink spaghetti,” Fuentes said. “Instead of using
noodles, they used beets. I rarely eat beets and I loved
it. They used beets and diced tomatoes instead of a
thick sauce so it was all fresh and really good.”
After each meeting, the women are given
10-15 pounds of food from the food bank, based on
what was prepared in class. This has made a huge
impact on grocery shopping for Fuentes.

“I usually do my grocery shopping once a month
because that is when I get paid, and then I don’t
have to make tons of trips back,” she said. “Because
of HE/AL, I really haven’t had to buy a lot of fruits
and vegetables, because we get them every week.”
On a recent shopping trip to the Fiesta Mart in
downtown Houston, Fuentes examined the fresh produce in the store before selecting her items.
“I love making salads, but I don’t buy iceberg lettuce anymore,” she said, pushing her cart slowly down
the produce aisle. “I use spinach, because the iceberg
lettuce doesn’t have a lot of nutrients. I also put tomatoes, cucumber, bell pepper and a little bit of shredded
cheese for protein.”
The changes that Fuentes and her family have
made in the last few months have not only improved
her health during pregnancy, but they have also
improved her father’s quality of life after his cancer
diagnosis. He is currently finishing chemotherapy
treatments in Austin and his doctors have said that
the changes in his diet have helped his overall health.
“After the class ends, I know I will continue to eat
healthy, but it’s sad the class has to end because I know
there is so much more they can teach us,” Fuentes said.
“The women are positive, successful. They care
about us and our babies and they want to help make
us do better.”

HE/AL participants practicing aerobics
at their weekly meeting.

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Dr. Sharma’s
Healthy Six-Pack
Shreela Sharma, Ph.D., directs the Healthy Eating, Active
Living program at The University of Texas Health Science
Center at Houston School of Public Health. A trained dietitian
and physical therapist, Dr. Sharma offers six healthy meal
and snack options for busy parents and kids.

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Fruit smoothies

Place a variety of frozen fruit (pineapple, strawberries, mixed berries,
frozen banana) in a blender with water and a tablespoon of lemon
juice. Blend. Add plain or flavored yogurt if you like and blend again.
Portion into to-go coffee mugs and garnish with a straw.

Trail mix

Combine regular Cheerios with a variety of nuts such as almonds,
walnuts, peanuts and cashews. Toast this mix lightly together.
Add raisins. Drop into snack-size baggies to take to school or work.

Fruit with nut spread

Slice an apple and serve with peanut butter or almond butter.

Warm breakfast tacos

Heat up some corn tortillas or whole wheat tortillas on a skillet. Add
cheese, sliced avocados and tomatoes, salt and pepper. Roll up to eat.

Peanut butter and banana sandwich

Toast a slice of whole wheat bread. Spread with peanut butter and
place sliced bananas on top. Finish with a drizzle of honey for an
open-faced sandwich.

Hard-boiled eggs

Boil and shell eggs over the weekend and store in the refrigerator for
an easy grab-and-go protein. Or, add the eggs to sandwiches.

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Seven Years a Survivor

James Ragan was diagnosed with terminal cancer as a young teen. Until 20, a documentary,
captures the life of this determined Texan who raised millions for pediatric cancer research.
B y B r i t n i N. R i l e y

Until 20 Screening
when

Tuesday, Sept. 20
6 – 8:30 p.m.
where

TMCx
2450 Holcombe Blvd.,
Suite X
cost

Free; donations welcome

All donations go to the Triumph Over
Kid Cancer Foundation.

panel discussion
moderator

Robert C. Robbins, M.D.
President and CEO of the Texas Medical Center

opening remarks

Ronald A. DePinho, M.D.

President and CEO of The University of Texas
MD Anderson Cancer Center

panelists

Winston Huh, M.D.
Pediatric Hematology and Oncology at The
University of Texas MD Anderson Cancer Center

Valerae O. Lewis, M.D.
Orthopedic Oncology at The University of Texas
MD Anderson Cancer Center

Geraldine Moriba
Director and Producer of Until 20

please register at
eventbrite if you plan
to attend:

tmcscreeningofuntil20.eventbrite.com

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W

hile playing in a tennis tournament in Italy when he was 13,
James Ragan noticed swelling in his
left knee. At the end of the match, the
Corpus Christi native was taken to a
local hospital.
The diagnosis was devastating.
In Italy, Ragan learned he had a
rare bone cancer called osteosarcoma,
a diagnosis verified by doctors at The
University of Texas MD Anderson
Cancer Center upon his return to the
United States. This news marked the
beginning of a journey that changed
not only Ragan and his family, but the
lives of many others.
Ragan died at age 20 in 2014. He
was a junior at Rice University.
“I met James when he was first
admitted to MD Anderson,” said
Valarae O. Lewis, M.D., an orthopedic
surgeon and oncologist. “He was an
incredible tennis player, but when we
took out his bone and reconstructed
it with a metal prosthesis, he could no
longer play high-impact sports.”
Following Ragan’s initial surgery,
he completed a round of chemotherapy
and was cleared of cancer. In remission,
he rechanneled his passion for tennis
into learning more about golf. But
his cancer-free days were short-lived.
Within four months, the cancer had
returned and spread to his lungs.
“Osteosarcoma is like one of those
flowers that you blow and the seeds go
everywhere,” said MD Anderson nurse
Anna Foy in a documentary about
Ragan’s life, titled Until 20. “There are
tiny, tiny particles of this cancer in your
blood, and once it spreads it is just like
a wildfire.”
Ragan returned to MD Anderson to
continue treatment and begin his fight
to end pediatric cancer.
“It was just his nature to fix a problem when he saw one,” Lewis said. “He
was very proactive in that sense. He
saw what he and his family had to go
through and he did not want anyone
else to have to do that.”
For his 16th birthday, Ragan threw
a toga party to kick off the Triumph
Over Kid Cancer Foundation, which he
started with his sister, Mecklin, to fund
research for osteosarcoma treatments.
The foundation partners with MD
Anderson Children’s Cancer Hospital
and the Driscoll Children’s Hospital in
Corpus Christi, Texas.
Over the seven years Ragan battled

I thought he was invincible—even though they said he only had one year.
We all kept saying something was going to happen, he’s too good to be taken by
this disease.

— JAMILA PAKSIMA
Co-director/Producer of Until 20

cancer, he underwent six surgeries and
numerous rounds of chemotherapy and
radiation to attack the tumors that had
metastasized to his lungs. In spite of his
illness, Ragan graduated second in his
high school class and went on to play
Division I golf for Rice University.
While in treatment at MD
Anderson, Ragan became an ambassador for the hospital and worked with
government officials to raise awareness
of the lack of funding for pediatric cancer research. He became close to many
other patients and helped them in any
way he could.
“There was another sarcoma patient
I was treating whose cancer had metastasized all over his body, and he was not
able to go to his high school graduation,” Lewis said. “James saw this, and
he and his mother got in touch with the
superintendent of schools and we were
able to have a graduation for the patient
at MD Anderson. It meant so much to
this child. To this day, I remember that
boy’s face when he received his diploma
in his cap and gown. That was because
of James.”
Fellow sarcoma patient Geraldine
Moriba heard about Ragan while
she was receiving treatment at MD
Anderson. The Emmy Award-winning
CNN journalist and filmmaker enlisted
the help of filmmaker and friend, Jamila
Paksima, to document Ragan’s story.
“When I met James, he knew
that he only had about a year to live,”
said Paksima, who co-directed Until 20
with Moriba. “Because of this, our
conversations were very delicate, but
I was so inspired by his optimism and
his mission to raise awareness of
childhood cancer.”
Paksima and her film crew followed
him and his family at home, in the car,
to every medical appointment and
through every vulnerable moment.
Until 20 sheds light on the struggles
of Ragan, his family, friends, doctors,
and entire care team, all the while highlighting the lack of research and federal

James Ragan, the subject of Until 20. Credit: Courtesy Photo

funding for pediatric cancer.
“James wanted to do this documentary because he wanted pediatric cancer to end with him, and I really wanted
that for him,” Paksima said. “I thought
he was invincible—even though they
said he only had one year. We all
kept saying something was going to
happen, he’s too good to be taken by
this disease.”

The Triumph Over Kid
Cancer Foundation

has funneled more than $3 million to
pediatric cancer research through a
partnership with MD Anderson and
the Children’s Sarcoma Project.

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23

SPOTLIGHT

GINA LUNA, managing director for JPMorgan Chase in the
Houston region and immediate past chair of the Greater Houston
Partnership, spoke with William F. McKeon, executive vice president and chief strategy and operating officer of the Texas Medical
Center, about leadership styles, work-life balance, and the benefits
of living and working in Houston.

Q | Take us back to the very beginning. Where were
you born and raised?

A | I was born in Hereford, Texas. Let me start by

saying it’s a very glamorous place, in the Texas panhandle, near Amarillo. There’s maybe 15,000 people
on a really good day, and it’s named after the Hereford
white-faced cow. It’s feedlots, the beef capital of the
world. My mom’s family business was farming and
ranching, so my grandparents had lots of farm and
ranch land. My dad was a banker, so we lived in the
“city.” I did spend time on the farm and in the country.
We knew almost everybody in the town. What’s so
fun is I often meet people who know somebody from
Hereford, because if you say, ‘Hereford,’ of course they
remember and say, ‘Oh, you must know so-and-so,’
and invariably I do know the name. I have a brother,
two years older than me, and a sister who’s four
years younger.

Q | Did either of your siblings also follow in your

father’s footsteps and pursue a career in banking?

A | My sister worked for Chase, in the investment

bank, as an analyst after undergrad, and then when it
was time for her to go back to graduate school, instead
of going to business school she went to culinary
school. She and my brother are actually both trained
chefs. Neither is a professional in that field now, but
it’s a little intimidating if you’re in the kitchen
together. My mom is basically Martha Stewart
and the two of them are trained chefs and I’m not,
but I can follow a recipe.

Q | Tell me about your parents.
A | My father was in local banking at Hereford

State Bank, what we would call consumer and small
business banking—the friendliest man in town who
knows everybody. It was perfect for him and he did it
until he retired. Now his favorite thing to do is go to
Hereford State Bank on Fridays and serve popcorn to
the customers that come in the lobby. I always say he’s
the public relations arm of the bank. My mom is an
amazing role model for me. She is among the smartest
people I know, and she is definitely the most resourceful. There is nothing she can’t do. My parents raised
us to have a strong work ethic and to be responsible
and resilient.

Q | When did you leave Hereford? Was it university
that took you out of your hometown?

A | I went to Texas A&M because I loved the Aggie

traditions and values and I thought I would get a
good education. During my junior year at A&M, I
was in business school and I thought I wanted to do
an internship in banking and finance, so I went to a

24

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» p u ls e | sept ember 20 1 6

professor and said, “Where do you think would be a
good internship?” He said, “There’s one internship for
an Aggie at Texas Commerce Bank in Houston, and
you need to get that internship because that’s the best
one and you’ll get the best experience.” I did, and I
came here as a summer intern between my junior and
senior year. I had a great experience. I loved the work,
I loved the people. My now-husband was a few years
ahead of me; he was working at the bank already, and
he was the person they assigned to be my mentor for
the summer. I met him on my second day of work.
I ended up getting an offer at the end of the summer to be an analyst after I graduated, which I didn’t
accept because I thought, ‘Who would accept the first
job they’ve ever been offered?’ It didn’t seem like the
right thing to do. I said, “Thank you very much but I
would like to think about it.” I went back to school and
interviewed with everybody and got lots of job offers
and then thought, gosh, I think I really liked what I
had. I ultimately accepted the offer, so this is literally
the only place I’ve ever worked.

Q | What’s the best part of banking?
A | To me, the fun part is doing the things that are not

what people expect. In this company of 235,000 smart
people all over the world, we have somebody who
knows a lot about almost everything. When I’m able
to find the right person or some valuable information
and make connections that help people, that’s exciting.
We do this inside the firm, but it’s also really fun to do
that in the community because we’re in a position to
know a lot of people and know about their businesses.

Q | How would a colleague describe your style?
A | They would say I have a lot of energy. I’m very

collaborative. I don’t take no for an answer very easily.
I always think there’s a way to get something done.
I often see people referring to optimism as a
trade-off, as if you cannot be both an optimist and a
pragmatist. I don’t buy that at all. It ties very much
into my belief that there’s always a way. Short of being
in two places at once, which is what I always want the
most, I really believe I can almost always find a way to
make something work. It also comes from being very
grateful for the big things and the small things every
day, and having the perspective that things happen
for a reason.

Q | Has your leadership style remained constant or
has it evolved over the years?

A | I do think you learn from people all along the way.
People who you work for, people who you work with. I
think my style is consistent, but I hope people would
say I’ve refined and learned skills. I do think you have

to, at some point, make a conscious decision to step up
and lead in a certain way. I would say five years ago my
leadership was much more around doing my job well,
if you will, and then the last five years I’ve had more
opportunity to lead more broadly and through community impact, like with the Greater Houston Partnership.
In our company, there’s a strong culture and so you
learn to be successful within that culture. Then when
you lead more broadly, you realize, “You know what?
Not everybody grew up in the JPMorgan Chase culture.” The way we all hold each other accountable and
the standards that we have don’t necessarily apply to
everybody else. You learn a different way of driving at
the same pace. I think we move fast in this organization. Patience is probably not my strongest attribute.
People at the Partnership would say, ‘Gina, Rome was
not built in a day,’ and I’d say, ‘If it could be, we should
go ahead and do that.’ It’s always a matter of prioritizing, right?’
With that said, there have been several points in
my career where I’ve had to rely on borrowed confidence, where I have been asked to take on a responsibility, a role, whatever, that quite honestly, in my heart
of hearts, I was thinking, ‘I wonder if anybody knows
that I don’t have a clue how to do this.’ But then there
is someone who thinks I can do it, so I think I must be
able to do it. You fake it until you make it.

Q | What is your perspective of the Texas

Medical Center?
A | I think the medical center is an absolute jewel. It
is one of the most valuable assets we have. Of course,
I mean that from an economic impact perspective, but
to me it’s on a very personal level, too. When someone
from outside Houston just gets a cancer diagnosis
and they’re calling me saying, “I have to go to MD
Anderson and I don’t know how,” because it’s Houston,
I say, “I’ll be thrilled to help you.”
In the bigger picture, when I sit and listen to the
plans for TMC3 [an ambitious new innovation campus
still in the planning stages], and TMCx [an accelerator
program, launched in 2015, that offers startup companies shared workspace and guidance from health
care leaders], I get so excited because I think about
what that will mean for Houston in terms of our next

generation. The things that will come out of that, that
will change people’s lives, save people’s lives, improve
people’s lives—we can’t even imagine what that’ll be.
It’s exciting to me. It’s so big, it’s so impactful, it’s so
innovative, that we will attract the best talent in the
world to be a part of it.

Q | How do you balance your personal life with the

work demands that come with leadership?
A | I follow this rule when I’m trying to determine
where I should be, particularly when it’s work or
community-related versus family, because those
things overlap all the time. My rule is to think about
who’s going to miss me. If I’m not at a cocktail reception, is anybody even going to go, “Gina Luna is not
here.” Probably not. If I miss an important ball game
or school event, though, my child’s going to know I
wasn’t there. That’s a good barometer for me. Then
I also do the five-year rule—in five years if I look back,
am I going to be really regretful that I missed this or
I missed that? That’s how I make decisions.
On the other hand, I’ve never wanted my kids to
have the notion that the world revolves around them.
I like them to see that their parents have responsibilities, and we do lots of things in the world, not just
doting on them. That’s reality.

Q | What advice have you received from mentors?
A | I have as many mentors for personal life as I do for

professional life. When my boys were very little, one of
my mentors said, “One of the things I did with my kids
was just sit them down and tell them very overtly, you
are the most important thing in the world to me, so if
you ever need me, I will drop everything else and be
there for you.” I thought actually saying it seemed like
a good idea. My older son was like, “I know, Mom.” A
few years later it was time for the third-grade musical
and I had to be in Chicago. It was a meeting I couldn’t
change and I couldn’t miss. I was really feeling bad
about it. We had a talk about it and he just looked at
me and goes, “Mom, this is not one of those things. It’s
not that big a deal.” So there will always be challenges
and choices, but I think that honesty and just being
open really helps.
(Continued)

Short of being in two places at once, which is what I always want
the most, I really believe I can almost always find a way to make
something work.

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25

I think the best leaders are the ones who are always looking to make
somebody else look good. The person who works for me, I want to make
them look good. The person I work for, I want to make them look good.
— GINA LUNA
Managing Director for JPMorgan Chase in the Houston Region

Q | What advice do you have for young executives

who aspire to be leaders and still have a great home
life and raise a family?
A | I always say that early in your career, you need to
be really good at what you do. Don’t spend so much
time thinking about your ascent to CEO-hood. You
miss the table stakes along the way, which is being
capable and credible and reliable. I think the key is to
be the person that people can call on to do what needs
to be done. If there’s a problem, call me. If there’s an
opportunity, call me. You deliver on that. I’ve taken
on some pretty unattractive assignments because I
could see that it needed to be done, and I thought, “I
can do that.” Looking back, some of those things were
the opportunities that got me exposure and credibility that it would have taken ten extra years to get if I
would have said no thank you. Don’t think small, think
big about what’s possible, because what’s possible is
amazing. TMC3 is an example of that. Why would we
ever assume we couldn’t do that? Of course we can.

Then you have to have sponsors, people who help
you along the way. I don’t know of people who have
a great, successful career who do it on their own. The
relationships you develop are critical to moving you
along that path. I also think that’s what makes it fun.
When I reflect back on my career, someday, I think it
will be the relationships and what people did to help
me and what I did to help other people that will be the
most meaningful.

Q | I remember someone once told me that you should
never worry about your first job, but rather focus on
your first boss, as you want to find someone who is
confident enough in themselves to be your advocate.
A | I couldn’t agree with you more. I think the best
leaders are the ones who are always looking to make
somebody else look good. The person who works for
me, I want to make them look good. The person I work
for, I want to make them look good.

Q | Tell me your thoughts about Houston.
A | I love Houston. I really do love this city. I think

this is a city of people who help each other. People are
accessible, and they’re open; they’re non-judgmental
and they’re accepting and they’re more than willing to
help or to have a conversation. I love the diversity of
our city. I think that is a huge strength for us. Houston,
to me, is optimistic. We are a can-do city. Whatever the
problem we’re facing, whether it’s municipal finance,
or it’s flooding, or it’s the workforce gap, I have confidence we’ll figure it out. We always do.

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8/12/2016 3:36:12 PM

The Poor Among Us

In his new book, Dr. Peter J. Hotez argues that most of the world’s neglected tropical diseases
can be found in pockets of poverty amid the world’s wealthiest economies
By Maggie Galehouse

D

r. Peter J. Hotez became the voice
of the Zika virus some 18 months
ago, in part because of his prescience.
“I was one of the first to predict,
in 2014, that Zika was coming to the
western hemisphere,” said Hotez, M.D.,
Ph.D., and dean of the National School
of Tropical Medicine at Baylor College
of Medicine. “Then, at the end of 2015,
I wrote that Zika was headed to Florida,
to the Gulf Coast.”
His New York Times op-ed piece
in April 2016, titled “Zika is coming,”
drew national attention, as did his
interview with National Public Radio
in early August.
“I have been pretty much predicting
everything Zika is going to do,” said
Hotez, 58. “I’ve been ahead of the
curve every step of the way.”
But the Zika virus, which can lead to
microcephaly in babies, is only one
of his specialties.
Hotez, a professor of pediatrics,
molecular virology and microbiology
at Baylor and president of the Sabin
Vaccine Institute, has been studying
neglected tropical diseases for several
years. Zika is just one of many threats
he describes in Blue Marble Health, his
new book that outlines a new global
health paradigm.
The traditional understanding of
global health, which compares unique
diseases in less developed countries
with more developed countries, is
outdated, Hotez says. Today, he argues,
most of the world’s neglected diseases
can be found in vast pockets
of poverty inside the world’s
wealthiest economies.
And these poor enclaves
are close to home, close to
the Texas Medical Center.
Hotez moved to
Houston in 2011 to launch
the National School of
Tropical Medicine. He
had been exposed to
poverty when he lived in

Washington, D.C. and during
his travels abroad, but after driving
around some of Houston’s Fifth Ward
neighborhoods, he had a revelation.
“The poverty I saw was a real eye
opener for me,” Hotez said. “It had a
huge impact on my research. I was
driving through these places and
saying ‘You know, this reminds me
of Tegucigalpa. This reminds me of
Guatemala City. This reminds me of
Recife in northeastern Brazil.’”
He and his team found neglected
tropical diseases amid poor populations in Texas and elsewhere, among
them parasitic infections including
Chagras disease, cysticercosis and
trichomoniasis.
In Blue Marble Health, Hotez says
neglected diseases need help from the
leaders of the G20 countries—the
20 major economies, including the
U.S. and the European Union—who
meet to discuss key issues in the
global economy.
“Leaders of the G20 countries need
to redouble their commitment to their
own neglected population, which in the
U.S. includes 12 million Americans who
live with neglected tropical diseases,”
Hotez said.

Hotez calls for new vaccines, new
drugs, and new diagnostics for Zika and
other diseases. He hopes his book will
reach everyone from university undergraduates to political leaders.
“I want this to become a book that
can actually influence public policy,”
he said.
Hotez’s involvement with the
Clinton Global Initiative, which enlists
global leaders to find solutions to world
problems, led to friendships with politicians and celebrities.
The foreword to Blue Marble Health
was written by Cher, the singer, actress
and activist.
“Yeah, I know Cher,” Hotez said. “I
got connected with her a few years ago
because she got interested in the whole
problem of neglected tropical diseases,
and I spent a day at her wonderful
Malibu mansion tutoring her. She’s
very committed. Very opinionated
about her political causes. Very much a
dyed-in-the-wool Democrat. She started
a school in Africa and very much wants
to do good in the world.”
Connecting with the public is
another one of Hotez’s specialties.
“I’m an interesting scientist in that
I have an M.D., a Ph.D., I keep up with
the grants and the papers, but I also
have another side of me which is public
engagement,” he explained. “And that’s
a little unusual. I write a lot for the public. I enjoy interacting with a general
audience, either speaking to them or
going on radio or TV. This is one of the
problems with training young scientists today. We discourage them from
doing public engagement. It’s seen
either as a waste of time or, even worse,
it’s seen as a form of grandstanding or self-promotion.”
Research!America, a policy
organization, published a
survey in 2013 that found that
70 percent of Americans
cannot name a living scientist,
Hotez said. Another survey by

Blue Marble Health
AUTHOR:
Peter J. Hotez, M.D., Ph.D.
PUBLICATION DATE:
Sept. 1, 2016
PUBLISHER:
Johns Hopkins University Press
PAGES:
224
PRICE:
$28.95 paperback; also available
as an ebook
the same organization found that
59 percent of Americans could not
name any institutions where medical
and health research were conducted;
even more galling, none of the top institutions named by the other 41 percent
were part of the Texas Medical Center.
“And I say that’s our fault,” Hotez
said. “You have to get out there. You
have to shape a brand.”

Peter J. Hotez, M.D., Ph.D. Credit: courtesy photo

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27

Suite Life

Hospital suites across the Texas Medical Center offer patients a hotel-like experience
By Christine Hall

Chris and Courtney Shields introduce their older son to his new brother. This is the second time the couple has stayed in the Signature Suites at Memorial Hermann-Texas Medical Center.

A

great view, a gourmet meal and a comfortable
place to lounge are amenities all of us expect at
upscale hotels. But these luxuries are available at hospitals across the Texas Medical Center, as well.
For patients who want to make their stay a little
more comfortable and are willing to spend over and
above what insurance will cover, hospitals including
Houston Methodist, Texas Children’s, Memorial
Hermann-Texas Medical Center, and CHI St. Luke’s
Health–Baylor St. Luke’s Medical Center offer suites
for one night or extended stays.
Courtney and Chris Shields heard about the
Signature Suites at Memorial Hermann-TMC from
their obstetrician. Courtney enjoyed the experience so
much with her first child that when she was ready to
deliver her second, she chose to stay in a suite again.

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“It’s so nice, and has room for our family and
friends to visit,” Shields said. “It feels cozy like a hotel
room, but you are still in the hospital.”
The 11 suites at Memorial Hermann-TMC run an
additional $250 a night. Benefits include a one-nurseto-three-patient ratio, a tea station that serves continental breakfast, and afternoon hors d’oeuvres. One of
the suites features a larger bed for athletes.
Many of the hospitals treat high-profile patients—
celebrities, politicians and athletes—as well as patients
from countries with strained governments. Most
take special precautions that include elevated
security systems.
Former president George H. W. Bush favors
Fondren 12, the tony 12th floor of Methodist Hospital
where he has stayed for bouts of pneumonia and flu,

according to media reports. But as the Shields’ know,
the suites aren’t just for the rich, famous or powerful.
Patients from all walks of life who come from all over
the world try to secure these special rooms, sometimes
months in advance.
“Our large and medium suites are the most popular, and we are full most of the time,” said Alice Baker,
guest relations manager for Houston Methodist, which
has offered suites for nearly four decades.
Fondren 12, which has 27 rooms, was named for Sue
Fondren Trammell. It opened in 1979, after the hospital
began attracting presidents, kings and other dignitaries from around the world, many of whom came for
care by famed cardiologist Michael DeBakey.
The out-of-pocket cost for a night in one of these
suites ranges from $300 to $1,345.

Top left: Chef Michael McMurtry cooking in Houston Methodist Hospital. Top center, bottom left: Culinary offerings at Texas Children’s Pavilion for Women. Top and bottom right: Tea service
at Houston Methodist Hospital.

Rooms With a View

Patients get luxury treatment in the four suites at
Texas Children’s Pavilion for Women, which opened
in 2012. They are first-come-first-served, and Gina
Marrinucci, manager of retail and concierge services,
says they turn over quickly. The suites include a separate space with room for visiting family and friends. A
stay here costs $750 for up to three nights.
“We believe in family-centered care, where mom
and baby are kept together to the extent possible,”
Marrinucci said. “There is also space for dad to hang
out or do business while mom has some quiet time.”
The spacious living area and view of the medical
center from one of the nine suites at Baylor St. Luke’s
Medical Center could almost be considered visual
therapy for patients. These suites, known as 23 Terrace,

Patients upgraded to suites definitely feel like they are staying in a
hotel, but in a hospital setting.

— ALEZA ESPINOSA
Manager of Patient Care, RN, Baylor St. Luke’s Medical Center

cost an additional $950 a night. Suites have been available at the hospital for close to 30 years, but moved to
the 23rd floor about 10 years ago.
It’s been widely reported that late Houston Mayor
Bob Lanier liked to stay in these suites when he was
treated for heart disease. The 6'4" former cowboy slept
in an extra-long bed.

The Royal Treatment

All of the hospitals top off the suite experience with

special features, including afternoon tea service complete with cookies, cake, beverages and other goodies.
Deluxe bedding, toiletry kits, newspapers and pretty
much any food patients desire are also available.
Houston Methodist’s Michael McMurtry, a
Culinary Institute of America-trained chef, learned
to cook a lot of different delicacies in order to cater to
the international patients at Fondren 12. He has also
prepared food for wedding receptions, christenings
and holiday parties in the hospital.

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29

Top left: Room service at Memorial Hermann-TMC. Right and bottom left: Rooms with a view at The Terrace at CHI St. Luke’s Health-Baylor St. Luke’s Medical Center.

The staff at Baylor St. Luke’s Medical Center
recently threw a birthday party for a patient, said
Aleza Espinosa, RN and manager of patient care at
23 Terrace. It's an example of the lengths staff will
go to make sure patients are happy.
At Texas Children’s, new parents receive special
touches including a gourmet celebration meal,
a fully stocked refrigerator, and a swaddle receiving
blanket. Massages and bedside spa services are available for an additional fee.
Each hospital can also bring in outside vendors to

pamper patients with haircuts, massages, manicures
and pedicures.
The hospitals work to make sure all patients feel
welcome. During a recent afternoon tea at Houston
Methodist, a woman in a burqa could only communicate through a translation app on her phone to convey
which food her family member wanted. The two men
working the food cart took it in stride.
While some patients may be recuperating from
elective procedures, close to 40 percent of the
patients at Houston Methodist suites come from the

emergency room, Baker said. The rest come from
different departments, including neurology, oncology,
cardiology, urology, and plastic surgery.
The nursing staffs across the different hospitals
take pride in being able to cater to vastly different
patients with varying needs.
“Patients upgraded to suites definitely feel like
they are staying in a hotel, but in a hospital setting,”
Espinosa said.

T MC HOS PI TA L S U I T E S AT A G L A NC E
CHI St. Luke’s Health-Baylor
St. Luke’s Medical Center

Houston Methodist
Hospital

Memorial HermannTexas Medical Center

Texas Children’s
Pavilion for Women

NAME | 23 Terrace

NAME | Fondren 12

NAME | Signature Suites

NO. OF SUITES | 4

NO. OF SUITES | 9

NO. OF ROOMS | 27

NO. OF SUITES | 11

PRICE | $750 for up to three nights

PRICE | $953 per night

(2 large suites, 3 medium, 22 small)

PRICE | $250 per night

PRICE | $1,345 for large, $645 for
medium, $300 for small per night

30

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» p u ls e | sept ember 20 1 6

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31

The intersection of ARTS and MEDICINE
By Britni N. Riley

H

e calls it “doodling” and says
that any reference to medicine
in his art is utterly unintentional.
But walking into Archway
Gallery in Montrose to view Michael
Mistric’s work, it’s easy to see how
more than three decades of nursing
have influenced his aesthetic.
Many of the images recall
shapes you might see in a petri dish
under a microscope. The colors are
striking, often neon, reminiscent of
pop music posters from the 1980s—

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with a zany, biological twist.
Mistric began his career as a
combat medic for the National
Guard in the 1970s. When he
finished his training, he decided
to continue his career in medicine,
eventually working as a nurse practitioner at the Michael E. DeBakey
Veterans Affairs Medical Center
Houston. Today, he teaches at the
Texas Woman’s University Institute
of Health Sciences-Houston and
The University of Texas Medical

Branch at Galveston.
Mistric’s self-proclaimed “doodling” started as a hobby to get
through long conferences in the
early 1990s. He applies bold colors
to canvases, boxes and plates,
and then takes a black oil pen to
outline shapes.
He does not have a plan for his
pieces when he starts them. Using
free-hand techniques, he lets the
shapes, images and colors come to
him organically.

“I don’t really have any preconceived approach to my pieces,
because I want you as a viewer to
see what you see without trying to
see what I meant it to be,” Mistric
says. “As with anyone working in
a field for over 30 years, it is only
natural that it would come out
in my work, but it is something
I do subconsciously.”
Michael Mistric, in front of one of his
paintings at Archway Gallery,
2305 Dunlavy; 713-522-2409 or
archwaygallery.com.

Health in Your Hands
Tech innovations for the 50+ crowd
By Christine Hall

P

eople past the half century mark are
not as technologically challenged
as younger generations might assume.
A recent AARP study found that
many individuals 50 and older use
smartphones and tablets. As a result,
people in that demographic are interested in improving their health using
digital health technologies.
The AARP study, “2016 Health
Innovation Frontiers,” estimates that of
the $102 billion in market revenue over
the next four years, $34 billion will be in
new revenue opportunities from health
and wellness technology across nine
separate markets, including medication
management, care coordination, cognitive health and social wellbeing.
“While people aged 50 to 75 are buying standalone technology like Fitbits
and activity trackers, the big takeaway
is that entrepreneurs are selling peace
of mind to baby boomers when they
should be focusing on the boomers’
parents and what is important to them,”
said Jody Holtzman, AARP’s senior
vice president for market innovation.
But while most players in the marketplace are focused on selling a product, family members want to give their
older loved ones some peace of mind.
“We will spend whatever to protect
our parents, and that said, you have
to get the OK from my mother to put
the product in her house,” Holtzman
added. “The conversation is not about
my peace of mind because she will tell
me to ‘Stick it.’ A conversation with my
mother will be about the things that
are important to her—like freedom,
control, independence and staying
connected to family, neighbors,
friends and the community.”
A big surge in telemedicine could
also benefit the 50+ crowd, said Jason
Burnett, Ph.D., who co-directs The Texas

it will be comparable to a house call.
Couple this approach with mobile
health applications or in-home health
monitoring technology and you have a
virtual home clinic of sorts.”
Here are four health tech
innovations tailored to individuals
50 and older:

intelliAIDE

This mobile health platform helps
doctors, patients and caregivers communicate in real time. Caregivers can
alert providers instantly about care
issues—including the timing of meals
and medicine—and create a “village”
of family support to share duties and
information. Clinicians and researchers
can view a patient’s status and monitor
the health of patients they’ve referred
to specialists.
IntelliAIDE’s platform enables clinicians and researchers to view patients’ status
on demand and efficiently triage all patients. Credit: IntelliAIDE

Jitterbug smartphone

This simple smartphone from GreatCall
offers large letters, easy navigation, and
built-in health and safety apps.

Caremerge

To simplify communication between
health care providers, caretakers and
patients, companies like Caremerge will
manage activities, connect family and
coordinate care. Caremerge offers an
easy-to-use mobile and web-optimized
software that is HIPAA compliant.

Posit Science
A screen from Double Decision, a speed training exercise from Posit Science.
Credit: Posit Science

Elder Abuse & Mistreatment Institute.
“A lot of information that is not
available during clinic visits ... will
become available by being able to
assess the patient in their home

environment,” said Burnett, assistant
professor of geriatric and palliative
medicine at McGovern Medical School
at The University of Texas Health
Science Center at Houston. “In a sense,

This company has created brain training software, including brain fitness
games that help with word retrieval,
memory and mental improvement.
In a study of older adults, the company
found that brain exercise cut the longterm risk of dementia nearly in half.

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33

Heavy Lifting

Memorial Hermann Life Flight celebrates four decades in the air
B y B r i t n i N. R i l e y

F

orty years ago, Houston’s first air
ambulance lifted off from the rooftop of Hermann Hospital.
James “Red” Duke Jr., M.D., the late,
legendary founder of the Memorial
Hermann Life Flight program, knew
from his military training that nothing
was more precious than time when caring for patients in a trauma setting.
“When you look at Houston and
Harris County geographically, the
way it has grown and the way it was
built to begin with, it is 50 miles wide
one way and very spread out,” said
Tom Flanagan, vice president and
chief operating officer of Memorial
Hermann-Texas Medical Center. “When
you look at trying to get patients care
in a timely manner when it comes to
cardiac, stroke victims and trauma
patients, time is of the essence.”
Life Flight began in 1976 with one
aircraft. On each trip, a nurse, a resident
and a pilot were sent out to receive
and stabilize a patient, and then bring
the patient back to the Texas Medical
Center for treatment. In the beginning,
Duke and his staff anticipated the
helicopter would be used 10 or 15 times
each month. In the very first month, the
air ambulance received 50 requests for
its services.
Flanagan worked as a flight nurse

with Life Flight for 23 years before
assuming the role of chief flight
nurse and program director.
“I got to watch the growth of
the program and see the difference the
technology has made,” he said. “We
have increased the speed at which we
can travel and that has improved the
outcomes for our patients.”
The helicopters are now equipped
with devices that allow Life Flight staff
to perform ultrasounds. Staff also have
the ability to administer blood. But
perhaps the biggest change since the
early days: aircraft can accommodate
two patients at a time.
“The ability to double-load and
bring two patients at one time back to
the hospital makes a huge difference,”
said Joseph Love, M.D., medical director of Life Flight and assistant professor
of surgery at McGovern Medical School
at UTHealth. “Having more space in
the helicopters also allows us to do
some of the more advanced trips—for
example a patient on a balloon pump or
an ECMO machine [which pumps and
oxygenates a patient’s blood, giving
the heart and lungs a rest]. We tend to
focus a lot on the trauma side of what
Life Flight can do, but the enormity of
what we do and the scope of what we
practice is very broad. We can take very
complex patients and bring them to the
medical center.”
Today, Life Flight retrieves critically ill and injured patients from a
150-mile radius that includes Houston,
Harris County, southeast Texas and
parts of western Louisiana. The fleet

James “Red” Duke Jr., M.D., founder
of Memorial Hermann Life Flight program.
Credit: Photo provided by Memorial Hermann-TMC
34

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» p u ls e | sept ember 20 1 6

now consists of six aircraft, 21 pilots,
20 flight nurses, 18 paramedics and
dispatchers, and eight mechanics. The
program runs 24 hours a day, 365 days a
year. In all, Life Flight has flown close to
150,000 missions.
This year marks the 40th anniversary of the program and the first year
without Duke, who passed away in
August 2015.
To celebrate the anniversary,
Memorial Hermann-TMC launched a
campaign of gratitude to say thank you
to the community. The hospital also
unveiled commemorative patches and
logo decals for the pilots and aircraft
in August.
“Red was a good friend and mentor
of mine,” Love said. “Here we are one
year later and we’re still doing fine.”

Above: Life Flight helicopter. Credit:
Provided by Memorial Hermann-TMC
Below: 40th anniversary commemorative
patches; Tom Flanagan, vice president and
COO of Memorial Hermann-TMC, shakes
hands with Life Flight pilots during an
anniversary celebration.

Solutions
TMC innovations

OCT. 13-14, 2016

By Christine Hall

6670 Bertner Ave., Houston, TX 77030

D

uring surgery, many patients are
outfitted with a urinary catheter,
which drains urine into a bag outside
the body. Due to the risk of contamination and the length of time a catheter remains in place, urinary tract
infections (UTI) are the fourth most
common infection in surgical patients,
says Thomas Aloia, M.D., director of
quality and outcomes for the surgery
division at The University of Texas MD
Anderson Cancer Center.
To improve those odds, Aloia
helped organize a team of nurses, nurse
practitioners, surgeons, anesthesiologists, physician assistants and others.
Working with the American College
of Surgeons and National Surgical
Quality Improvement Program, the
team collected data from 1,000 patients
to analyze the rate of complications.
According to the data, UTIs occurred in
2.8 percent of the patients.

To understand how the hospital
environment could be improved to
reduce the number of infections, Aloia’s
team developed the S.T.O.P. program.
An innovative way to assess the
handling of catheters, S.T.O.P. articulates best practices via four succinct,
memorable guidelines. Using these
guidelines, the team identified specific areas that needed improvement.
Subsequently, urinary tract infection
rates in surgery patients dropped to
0.5 percent.
“We then noted that the urinary
tract infection rate went down across
the entire hospital," Aloia said. "As we
presented last month at the American
College of Surgeons quality meeting,
these best practices diffused out to the
rest of the hospital via the nursing staff,
and the whole hospital got better. It’s a
great secondary outcome.”

Register Today!

LU X U R Y A PA R T M E N T S




S.T.O.P. PROGRAM
S Sterile placement |
T Timely removal |

Insert the catheter cleanly and properly.

Remove the catheter within two days or as soon as the

patient is able to make it to the bathroom independently.

O Optimal position of the urine bag |

Use hooks at a lower height on

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On-Site
Storage Included



Assigned
Garage Parking



No Water or
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24hr. Valet
& Concierge
Service



the IV pole and beds to attach the urine bag. Especially during patient transport,

Pets Accepted



there is a chance for reflux back to the bladder if the urine bag is placed above

Minutes from Texas Medical Center



the bladder.

Sophisticated Surveillance System



Discount to Texas Medical Center Employees

P Proper sampling |

Obtain clean, uncontaminated urine samples to

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validate the diagnosis of a urinary tract infection.

T H E

PA R K L A N E
ASK ABOUT OUR GREAT MOVE IN SPECIALS!

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713.526.VIEW
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35

ACCOLADES

AMY ARRINGTON, M.D., PH.D., medical director
of Texas Children’s Special Isolation Unit at Texas
Children’s Hospital, was recently named one of
Healthcare Design magazine’s 4th Annual HCD 10,
an elite group of design and architect professionals
who represent the most influential health care work
of the previous year. Arrington was recognized
under the clinician category for her work in the
development and design of Texas Children’s Special
Isolation Unit, which opened November 2015 and
is the only one of its kind in Texas and the
southwest region.

DAVID BASKIN, M.D., vice chair of the department
of neurosurgery and director of the Kenneth R.
Peak Brain and Pituitary Tumor Treatment Center
at Houston Methodist Hospital, has been recognized by his patients as one of America’s Most
Compassionate Doctors by Vitals, a company that
works to provide tools to engage patients in their
health care. This is the fifth year in a row Baskin has
received this honor.

» p u ls e | sept ember 20 1 6

MARGARET SPITZ, M.P.H., professor in the
NCI-designated Dan L. Duncan Comprehensive
Cancer Center at Baylor College of Medicine, has
been appointed by President Barack Obama to
the National Cancer Advisory Board. An expert in
molecular epidemiology, Spitz has a long-standing
interest in genetic susceptibility to lung cancer. The
primary task of the 18-member advisory board is to
advise the Secretary of Health and Human Services
and the director of the National Cancer Institute
on a range of issues affecting the nation’s cancer
program and NCI operations.

JAMES LANGABEER II, PH.D., professor at the
School of Biomedical Informatics at The University
of Texas Health Science Center at Houston, has
been asked to chair the national committee that will
implement Guideline Advantage, a comprehensive
quality improvement tool for analyzing digitized
electronic health records. The tool, developed by the
American Heart Association in conjunction with the
American Diabetes Association and the American
Cancer Society, emphasizes chronic diseases,
including cardiology, neurology, endocrinology
and oncology.

tmc

EMILY SEDGWICK, M.D., associate professor of
radiology in the section of breast imaging at Baylor
College of Medicine, has been named the 2016
recipient of the Ben and Margaret Love Foundation
Bobby Alford Award for Academic Clinical
Professionalism, an honor given annually to a Baylor
physician who best exemplifies professionalism in
the practice of medicine. Throughout her career,
Sedgwick has been dedicated to improving health
care and making the breast cancer treatment process more streamlined and less intimidating
for patients.

WAYNE J. FRANKLIN, M.D., director of the
Adult Congenital Heart Disease Program at Texas
Children’s Hospital, has been accepted into the second class of The Aspen Institute’s Health Innovators
Fellowship. Franklin is among 21 health care leaders
who will participate in the two-year fellowship
designed to strengthen innovation across the U.S.
health care ecosystem and create new approaches
that will improve the well-being of Americans.

36

ANTONIOS MIKOS, PH.D., the Louis Calder
Professor of Bioengineering and Chemical and
Biomolecular Engineering and director of the
J.W. Cox Laboratory for Biomedical Engineering
and of the Center for Excellence in Tissue
Engineering at Rice University, has been elected to
the Academy of Athens—Greece’s national academy
and highest research establishment—as a corresponding member in the Section of the Sciences.

GREGORY WILLIAMS, PH.D., a member of the
senior administration team in the department
of OB/GYN at Baylor College of Medicine, will
release his first book, Shattered in the Darkness, in
December 2016. The book, which will be published
by Thomas Nelson Publishing Company, encourages discussion, education and awareness of
child abuse.

WHR in the TMC :
Thought-leaders
in Healthcare Design

Kyle Basilius

Laurie Waggener

Sara Shumbera

Anthony Haas

Leigh Stringer

At the forefront of healthcare architecture, WHR designs spaces that better
enable patients to heal, while supporting hospital staff as they enhance the
patient care experience. Join us during this year’s Healthcare Design Expo
as five expert WHR thought-leaders discuss recent projects, principles of
effective healthcare design, lessons in inpatient/outpatient architecture,
and the psychology of patient experience as it impacts healing.
Visit hcdexpo.com to sign-up.

WHR Speakers:
Kyle Basilius/Sara Shumbera
“The New Bispebjerg Human Hospital
Patient Experience: Designing a New
Danish Standard”
Laurie Waggener/Leigh Stringer
"Lessons from the Corporate World:
Applications for the Healthcare Workplace”

Anthony Haas
“Danish Healthcare Design Competitions:
Diving into the Difference Between Danish
and American Project Team Selection”

Laurie Waggener
“Infection Transmission Prevention and
Safety Planning: Lessons for Inpatient and
Outpatient Design”

Laurie Waggener
“Psychology in the Workplace: A Foundation
for the Importance of Patient Experience”

T H E L E A D I N G H E A LT H C A R E D E S I G N F I R M
I N T H E W O R L D ’S L E A D I N G M E D I C A L C E N T E R

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37

MAKE A HOUSE CALL TODAY! Offer ends September 30, 2016

,

$25 000
ADDITIONAL INCENTIVE
FOR LOCAL DOCTORS*
$25,000

FOR A LIMITED TIME, we are adding
to our community specific Design Center incentives for local doctors who
purchase a PARTNERS IN BUILDING home. Whether you are thinking about moving to one of the luxury communities where we build
or building on your own land, the extra money is yours to spend. It can go toward upgraded flooring or fixtures or extra crown molding or
anything else our Design Center offers. Whatever you want to make your new home the special place you’ve always imagined.

Contact your PARTNERS IN BUILDING Sales Counselor today.

LUXURY, CUSTOM HOMES FROM THE $500s to $2 MILLION
* This incentive program is available on homes for which a contract is signed by September 30, 2016. $25,000 incentive available
toward Design Center options only and is in addition to current community or Build on Your Lot incentives. Can not be combined
with any other offer. Offer may be changed or cancelled at any time without prior written notice. See sales counselor for details.

38

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» p u ls e | sept ember 20 1 6

CHERYL COOPER, REALTOR®
Working with medical professionals since 1990.
Now more than ever, the right agent
makes all the difference.

BRAESWOOD ESTATES

HEIGHTS

Join the
World Affairs Council
of Greater Houston
in celebration of the
17th annual

JESSE H. JONES
Award Gala

BRAES HEIGHTS

GREENWOOD KING

PROPERTIES

Broker Associate
ccooper@greenwoodking.com
Cell: 713.254.4984

We are proud to honor
Dr. Robert C. Robbins as its
2016 International Citizen
of the Year.
Tuesday, September 13th, 2016
VIP & General Receptions 6:30 PM
Dinner & Awards 7:30 PM
Hilton Americas
1600 Lamar Street
Houston, Texas

TMC License Plates
Are now available starting at $30
www.txdmv.gov

For details on Gala sponsorship/
participation: call 713.522.7811
www.wachouston.org

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39

CALENDAR

September 2016
9

12-16

13-15

14

15

An Evening with
Cristin O’Keefe Aptowicz, Author of
Doctor Mutter’s Marvels
Friday, 7 – 9:30 p.m.
The Texas Medical Center Library
1133 John Freeman Blvd.
Cost: Individual tickets start at $100:
$50 for students
sarah.keith@library.tmc.edu
713-799-7108
Houston Methodist Cardiac MRI
Workshop
Monday – Friday, 7 a.m. – noon
Houston Methodist Hospital
6565 Fannin St.
Registration and fee required
cme@houstonmethodist.org
713-441-4971
Updates in Hospice and Palliative
Medicine and Intensive Board
Review Course
Tuesday – Thursday,
7:15 a.m. – late afternoon
MD Anderson Cancer Center
1515 Holcombe Blvd.
Robert C. Hickey Auditorium, Floor 11
R. Lee Clark Clinic
Registration and fee required
egagneau@mdanderson.org
713-745-0080
Pearls of Wisdom Luncheon with
Jenna Bush Hager
Wednesday, 11:30 a.m. – 1 p.m.
Houston Country Club
1 Potomac Dr.
Cost: Individual tickets start at $250
skoziol@mhahouston.org
713-523-8963
It Must Be PitchCraft Seminar
Thursday, 11:30 a.m. – 1 p.m.
JLABS @ TMC
2450 Holcombe Blvd., Suite J
rlongley@its.jnj.com
346-772-0302

16-17

The Art and Science of Managing the
New Melanoma Landscape
Friday, noon – 5 p.m.
Saturday, 7 a.m. – 3 p.m.
Houston Marriott Medical Center
6580 Fannin St.
Registration and fee required
ambaring@mdanderson.org
713-563-7388
Houston Mood Disorders Conference
Friday, 5 – 8:30 p.m.
Saturday, 7:30 a.m. – 6 p.m.
Memorial Hermann Conference Center
6411 Fannin St.
Registration and fee required
lavonne.carlson@uth.tmc.edu
713-741-7879

20

22

29

Screening of Until 20
Tuesday, 6 – 8:30 p.m.
TMCx Accelerator
2450 Holcombe Blvd., Suite X
Registration requested:
tmcscreeningofuntil20.eventbrite.com
briley@tmc.edu
713-791-8827

SEPTEMBER: CHILDHOOD CANCER
AWARENESS MONTH

September is recognized as Childhood
Cancer Awareness Month to honor
children who have been diagnosed
with cancer and family members
who have supported them. Cancer is
the second leading cause of death in
children ages 5-14.
According to the National Cancer
Institute, more than 15,000 children
are diagnosed with cancer each year in
the United States. The cause is mostly
unknown, with only five percent of all
childhood cancers caused by inherited
genetic mutations.
Researchers at the Texas Medical Center
and around the world are working to
find cures for cancers that affect children.

Stem Cell Tourism Near and Far:
Achieving a Compromise for
the Patient
Thursday, 7:30 – 9:30 a.m.
James A. Baker III Hall
Rice University | Doré Commons
6100 Main St.
melissal@rice.edu
713-348-4945
James T. Willerson, M.D.,
Cardiovascular Seminar:
Yang Xia, M.D., Ph.D.
Thursday, 4 – 5 p.m.
Texas Heart Institute
6770 Bertner Ave.
vsweed@texasheart.org
832-355-9144

FOR MORE EVENTS, VISIT TMCNews.org
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» p u ls e | sept ember 20 1 6

The Lone Star State is known for its independent spirit
and pioneering culture. So is Texas Children’s Hospital.
As one of the top four hospitals in the nation for children’s
care, we’ve spent six decades conducting and providing
the most innovative research and treatments in pediatric
medicine, pushing boundaries and exploring new territory.
We’re keeping the frontier right here in Houston, where
you’ll find extraordinary care whenever you need it.

Best in Texas.
4th in the U.S.

©2016 Texas Children’s Hospital. All rights reserved. MPR1503_060316. Texas Children’s Hospital is the only children’s hospital in Texas on U.S.News & World Report’s 2016-2017 Honor Roll.