Smithsonian - 12.2019

(Dana P.) #1
HEN A 7.1-MAGNITUDE earthquake rocked
Southern California on July 5, it was
the most powerful to hit the state in 20
years. Cracks snaked through buildings,
roads split, and fi res exploded and raged
at a mobile home park in Ridgecrest, the epicenter. And yet, with-
in a few hours, a team of chefs from World Central Kitchen was
there. WCK, a nonprofi t founded by José Andrés, 50, comman-
deered a middle-school kitchen and, with the help of local chefs
and volunteers, began cooking. By lunchtime the next day, there
were thousands of sandwiches made by assembly line at a long
foldout cafeteria table. By dinner, fi rst responders and scores of
displaced residents were being delivered hot plates of smoked
paprika roasted chicken over rice studded with stewed tomatoes
and bell peppers.
They were still cooking in California when, fi ve days later, with
Hurricane Barry bearing down on the Gulf Coast, World Central
Kitchen sent chefs to Lafayette, Louisiana , and New Orleans. In
about a week, WCK prepared some 35,000 meals.
Over the last two years, in fact, there has not been a day without
WCK chefs deployed somewhere—in Mozambique, Guatemala,
Colombia, Venezuela, Tijuana and, this past fall, in the Bahamas
after Hurricane Dorian, where WCK dished up one million meals.
Media coverage of WCK has focused on Andrés, the outspo-
ken chef from Spain who arrived in the States at 21, after a three-
year stint in Catalonia at El Bulli, which was the world’s most
acclaimed restaurant before it closed in 2011. By 23, Andrés was
chef at Jaleo in Washington, D.C., and now he oversees an empire
of some 28 restaurants in 12 cities, including D.C.’s modernist ha-
ven Minibar, which holds two Michelin stars.
But World Central Kitchen is not just another celebrity char-

In the experimental treatment, infants received their re-en-
gineered stem cells just 12 days after some of their bone mar-
row was obtained. They went through a two-day, low-dose
course of chemotherapy, which made room for the engineered
cells to grow. Within four months, some of the babies were able
to fi ght infections on their own. All eight of the initial research
subjects left the hospital with a healthy immune system. The
remarkably positive results made news headlines after being
published this past April in the New England Journal of Med-
icine. “Experimental gene therapy frees ‘bubble boy’ babies
from life of isolation,” the journal Nature trumpeted.
So far, the children who participated in that study are
thriving, and so are several other babies who received the
treatment—including O marion. “As a physician and a mom,
I couldn’t ask for anything better,” said Ewelina Mamcarz,
lead author of the journal article and fi rst-time mother to
a toddler nearly the same age as Omarion. The children in
the study are now playing outside and attending day care,
“reaching milestones just like my daughter,” Mamcarz says.
“They’re no diff erent.” Mamcarz, who is from Poland, came
to the United States to train as a pediatric hematologist-on-
cologist and joined St. Jude six years ago.
Other medical centers are pursuing the treatment. The Uni-
versity of California, San Francisco Benioff Children’s Hospi-
tal is currently treating infant patients, and Seattle Children’s
Hospital is poised to do the same. Moreover, the National
Institutes of Health has seen success in applying the gene
therapy to older patients, ages 3 to 37. Those participants had
previously received bone marrow transplants from partially
matched donors, but they’d been living with complications.
In the highly technical world of medicine today, it takes
teamwork to achieve a breakthrough, and as many as 150 peo-
ple—physicians, nurses, regulators, researchers, transplant co-
ordinators and others—played a role in this one.
Sorrentino died in November 2018, but he’d lived long
enough to celebrate the trial results. “In the early ’90s, we
thought gene therapy would revolutionize medicine, but it
was kind of too early,” said Gottschalk, who began his career in
Germany. “Now, nearly 30 years later, we understand the tech-
nology better, and it’s really starting to have a great impact. We
can now develop very precise medicine, with very limited side
eff ects.” Gottschalk, who arrived at St. Jude a month before
Sorrentino’s diagnosis, now oversees the hospital’s SCID-X1
research. “It’s very, very gratifying to be involved,” he said.
For now the SCID-X1 gene therapy remains experimental.
But with additional trials and continued monitoring of pa-
tients, St. Jude hopes that the therapy will earn Food and Drug
Administration approval as a treatment within fi ve years.
Simpson, for her part, is already convinced that the thera-
py can work wonders: Her son doesn’t live in a bubble or, for
that matter, in a hospital. He “can play barefoot in the dirt with
other kids, whatever he wants, because his immune system is
normal like any other kid,” she said. “I wish there were better
words than ‘thank you.’”


A GENEROUS


HELPING OF


HUMANITY


BRAVING STORMS, FLOODS
AND EARTHQUAKES,
THE RENOWNED CHEF
IS FORGING A NEW WAY
TO FEED THE NEEDY

by JANE BLACK
photograph by EMILIANO GRANADO

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WATCH A VIDEO of Mamcarz and Gottschalk describing
their breakthrough at Smithsonianmag.com/ingenuity
Free download pdf