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Dana’s Angels
Research Trust (DART),
the nonprofit dedicated to funding medical research, education and
treatment of the rare childhood disease Niemann-Pick Type C
disease (NPC), often referred to as “childhood Alzheimer’s,”
and other similar genetic diseases, is hosting its sixth
annual DART to the
Finish Charity Walk, on Saturday,
September 30, 2023, at
9:00 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
children 10 years old or younger are free. 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.
“We are so excited to be hosting our sixth
annual DART to the Finish Charity Walk on Saturday,
September 30th,” said Andrea Marella, co-founder of DART.
“The Walk brings together friends, family, sponsors, donors
and the whole community for a beautiful morning at Greenwich
Point Park where the money raised goes directly to support
crucial Niemann-Pick Type C disease research. We thank
everyone who has supported us these past 21 years since we
founded DART in 2002 after the NPC diagnosis of our daughter
Dana and subsequently our
youngest son Andrew.”
Dana Marella was the original inspiration for
DART after she was diagnosed with NPC at the age of eight.
Once an energetic, happy little girl, Dana eventually lost
all her abilities and was confined to a wheelchair. She was
unable to walk, talk, had a feeding tube and received a
tracheostomy. Despite her severe challenges and numerous
hospitalizations, she never lost her sweet nature, always
reaching to hold a hand, making her so deeply loved by all
who knew her. Her strength and perseverance were a constant
inspiration and taught everyone around her the true meaning
of life and to appreciate each day. She fought a courageous
battle for the 12 years after she was diagnosed. Sadly, she
passed away in 2013, just 11 days shy of celebrating her
20th birthday.
In 2004, just two years after Dana was
diagnosed, the Marella’s youngest child Andrew was also
diagnosed with NPC at the age of five. Andrew recently
celebrated his 24th birthday in June and is faring much
better, due to taking part in clinical trials that DART has
helped fund and spearhead in the past 21 years. Today Andrew
proudly works at the Prospector Theater in Ridgefield,
Connecticut, as an usher, among other positions at the
venue, which is known for providing competitive and
inclusive employment for adults and teens with disabilities.
“Andrew has been taking part in a clinical
trial administered by the NIH and is on two different
medications — cyclodextrin and miglustat - which have helped
hold at bay certain aspects of the disease,” noted Phil
Marella, co-founder of DART and Andrew’s dad. “DART has been
solely focused on finding better treatments and ultimately a
cure for NPC. When Dana was diagnosed, little was known
about NPC and there were no treatments, no clinical trials
and no hope. Most children with NPC passed away in their
early teens. Today, with the help of DART and our partners,
we have changed that fate.”
DART has helped spearhead eight clinical drug
trials and develop the first-ever newborn blood test for
early diagnosis of NPC. The NPC community is currently
working with the FDA on approving four treatments, two of
which have benefitted the Marella’s son Andrew and many
other children with NPC. 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 and is often referred to as
“childhood Alzheimer’s,” with it often becoming fatal in the
teenage years. But DART is helping to change that. As a
nonprofit organization, DART’s events like the DART to the
Finish Charity Walk, 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. In fact, the two recent FDA
approved medications for Alzheimer’s disease were created by
pinpointing a genetic biomarker - one of the same that is
shared by NPC patients. The next step for NPC research is
looking at more than 20 different biomarkers that can help
dictate a better path for treatment.
In addition to the clinical trials DART has
helped fund, the organization 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, three of which are in the later
stages of regulatory review with the FDA. The largest
newborn pilot testing program in the United States was
launched due to the DART and the NPC community — 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. The ScreenPlus
testing is being led by pediatric genetic expert Dr. Melissa
Wasserstein at The Children’s Hospital at Montefiore, 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 a brutal disease,” noted Phil Marella.
“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 21 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.
To learn more about Dana’s Angels Research
Trust (DART) or to register for the DART to the Finish
Charity Walk,
visit dartevents.org.
To learn more about Dana’s Angels Research Trust (DART),
visit danasangels.org,
on Facebook @danasangels,
Instagram @danasangelsNPC and
Twitter @danasangels.
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