AUGUST 2021 • LONGISLANDPRESS.COM 27
CHARITY SPOTLIGHT
BELIEVE IN A CURE
CREATING HOPE
Two-year-old Eli Reich was born with
FOXG1 syndrome, an extremely rare
and debilitating brain disorder that
causes severe cognitive impairment
and high risk for dangerous seizures.
But his parents, Ilissa and Scott Reich,
of Port Washington, did not take the
gut-wrenching news lying down. Instead,
they’re fighting to find a cure for
the currently incurable condition.
On Eli’s second birthday in April, the
family announced the launch of their
nonprofit organization, Believe in a
Cure, which will help fund important
scientific research toward finding a cure
for FOXG1 syndrome.
“The worst news that we received is that
there’s no treatment for FOXG1 Syndrome,”
Scott says. “No clinical trials,
very minimal research. ‘No hope’ was
what we were told.”
Doctors project Eli will not be able to
walk, talk, or feed himself, among other
things. He is one of only about 700
children to be diagnosed with FOXG1
syndrome worldwide.
The FOXG1 gene creates proteins that
are vital for many basic human functions.
For people with FOXG1 syndrome,
the gene does not produce enough
protein, resulting in symptoms such
as visual impairment, uncontrolled
movements, sleep disorder, seizures,
extreme and unprovoked irritability,
acid reflux, excruciating constipation,
and more. Eli therefore has more than
20 appointments per week, such as physical,
occupational, feeding, visual, and
other therapies, not including doctors’
appointments, the family says.
Believe in a Cure is fundraising for research
across the globe and is already
partnering on projects with several
research institutions, including Harvard
University, Massachusetts Institute
of Technology, and Broad Institute.
According to Scott, the findings
of the research would not only benefit
those who share Eli’s rare condition,
but also people with Alzheimer’s
disease, autism, schizophrenia, and
other conditions because they also
have links to the FOXG1 gene.
“This is something that can truly help
so many people around the world and
help pave the next generation of science
for those who come after us,” Scott says.
For more information, visit
webelieveinacure.org.
-BB
Eli Reich. (Photo courtesy Believe in a Cure)
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