BOJANMIRKOVIC/DIGITALVISION VECTORS
INCLUSIVE FAMILY
In 2013, she founded A Cure
for Ellie (now Cure LBSL) with
the mission to spread aware-
ness about the condition,
offer support to other fami-
lies and drive research toward
finding a cure. According to
Frigola-McGinn, since they
began their mission, the Cure LBSL team has
raised nearly $3 million dollars for research.

The foundation has also led to the formation
of a strong online community.

For many, an online community is key to
feeling supported on a daily basis.

“I was overwhelmed at first, and scared
to share. But then you see your kid, and
she’s just stronger than what they tell you,”
Vazquez says. “I probably worry about [Vio-
let’s condition] more than she does.”
The future can be uncertain when dealing
with conditions we know very little about,
but through the efforts of parents, doctors
and researchers, science is making promising
strides every day.

Kennedy Krieger neurogenetic specialist
Ali Fatemi, M.D., is one
of the researchers search-
ing for a cure for McGinn,
with research plans ranging
from those that involve new
techniques, from nanomed-
icine to stem cell therapy, to
gene editing.

Meanwhile in Philadelphia, CHOP is
looking at a whole classification of genes
using high-throughput screening (HTS).

HTS allows researchers to quickly con-
duct millions of chemical, genetic or
pharmacologic tests.

According to Frigola-McGinn, these tests
are being used to see which potential med-
ications already in use might also be helpful
for conditions affecting certain genes.

Vasquez knows that even with these
strides, there is still a long fight ahead.

“People have to stay strong, and it is
a fight,” she says. “I love calling our kids
TBCK warriors. That’s what it takes to fight
this rare condition. You really do have to be
a warrior.” T
The future can be
uncertain when
dealing with
conditions we know
very little about, but
through the efforts of
parents, doctors and
researchers, science
is making promising
strides every day.

Parenting isn’t
easy, but there
are strategies
that can help.

Parenting HelpLine: 800.243.7337
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