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DART
Celebrates its 20th Anniversary with the DART to the
Finish
g Charity Walk Scheduled for September 24
Charity Walk
Raises Funds for Rare Childhood Disease Niemann-Pick
Type C,
aka Childhood Alzheimer’s
Dana’s Angels Research Trust (DART) is honoring its
20th anniversary this year and holding its fifth annual
charity walk, DART to the Finish, on Saturday,
September 24, 2022, at 8:00 a.m., at
Greenwich Point Park in Old Greenwich, Connecticut. This
family-friendly and accessible two-mile walk is $30 for
adults 22 years and older, $15 for 10-to-21 years old,
and free for children 10 years old or younger. Virtual
walkers from anywhere in the world are also welcome to
join and can register with a $30 donation to DART. To
learn more and register, visit danasangels.org or dartevents.org.
The DART to the
Finish charity walk raises funds for the Greenwich,
Connecticut-based nonprofit Dana’s Angels Research
Trust, which is focused on funding research into the
rare childhood disease Niemann-Pick type C (NPC), which
is often referred to as childhood Alzheimer’s. Dana’s
Angels Research Trust was founded in 2002 by Andrea and
Phil Marella of Greenwich after two of their four
children, Dana and Andrew, were diagnosed with NPC. Dana
sadly passed away in 2013 at age 19. But Andrew, who
turned 23 in June, is doing better due to being enrolled
in a clinical trial to slow the progression of the
disease.
“DART has been
solely focused on finding better treatments and
ultimately a cure for NPC for the past 20 years,” said
Andrea Marella, co-founder of DART. “When our daughter
Dana was first diagnosed, so little was known about NPC.
There were no treatments, no clinical trials, no hope.
Most children with NPC passed away in their early teens.
Today, with the help of DART, we have changed that
picture. DART and its partners have spearhead eight
clinical drug trials and developed newborn blood tests
for early diagnosis of NPC. The NPC community is
currently working with the FDA on approving two of the
treatments DART has helped fund, which have benefitted
our son Andrew. In the U.S. alone, there are now 120
children enrolled in clinical trials and 50 more
international patients. These advancements and progress
have only been possible from the incredible support of
our wonderful DART community, here in Greenwich and
throughout the world, who have come together to support
funding that is truly saving lives."
DART has been
instrumental in being part of an NPC Therapy Accelerator
program supporting the work of more than 12 companies
currently developing treatments for the disease, two of
which are in the later stages of regulatory review with
the FDA. DART and the NPC community also launched the
largest newborn pilot testing program in the United
States — thanks to the leadership of Firefly Fund, a
DART partner, its founders the Andrews family of Austin,
Texas, and with financial assistance from the Ara
Parseghian Fund, DART and others. The ScreenPlus testing
is being led by pediatric genetic expert Dr. Melissa
Wasserstein at The Children’s Hospital at Montifiore, in
conjunction with the New York State Newborn Screening
Program, and is screening 175,000 newborns. This is the
largest newborn screening pilot study in the U.S.,
backed by $11.3 million in funding from the National
Institutes of Health, industry sponsors and patient
advocacy groups. It is the hope of the NPC community
families, including the Marellas, Andrews and
Parseghians, that other families will not have to go
through the lengthy, complex journey to find a
diagnosis, and that treatments and cures can be
accelerated.
NPC is so rare
that only about 200 children in the U.S. have been
diagnosed with the disease. and only a few, including
Andrew, live in Connecticut. This devastating genetic
disorder robs a child of the ability to live a long,
healthy life, often becoming fatal in the teenage years.
But, DART is helping to change that fate. As a nonprofit
organization, DART’s events like DART to the Finish,
help raise funds to support pivotal NPC research —
research that may also help millions suffering from
Parkinson’s disease, HIV/Aids, Ebola, heart disease,
stroke, Alzheimer’s disease and other disorders that
appear to be related to cholesterol.
“NPC is a brutal
disease,” noted Phil Marella, co-founder of DART. “It
impacts neurological and motor functions in young
children and is caused by a malfunction in the way the
body stores and processes cholesterol. While this
disease has impacted our family for 20 years, we have
only seen promising progress in treatment options in the
past ten years — specifically a clinical trial that our
son Andrew is enrolled in that has helped him deal with
the devastating impact of the disease.” Andrea Marella
added, “This clinical trial and other research into NPC
is made possible only through the generous donations of
our friends, community and sponsors. Holding the DART to
the Finish charity walk is our way of doing something
fun and raising much-needed funds at the same time.”
To date, DART
has raised more than $6 million that has gone toward the
search for a better treatment and ultimately a cure for
NPC. DART is particularly proud of its commitment as a
founding member of a unique, collaborative drug
development program called SOAR-NPC or Support Of
Accelerated Research. Working with other NPC families
and research institutions, SOAR’s collaborators have
four clinical trials already to their credit.
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