|
8th Annual DART to the Finish Charity Walk
Scheduled for Saturday, October 4, at Greenwich Point Park
Family-Friendly Charity Walk
Raises Critical Funds for Rare Childhood Disease Niemann-Pick
Type C (NPR) Research — Often Called
“Childhood Alzheimer’s”
Dana’s Angels Research Trust (DART),
the nonprofit organization dedicated to funding medical
research, education and treatment of the rare childhood
disease Niemann-Pick Type C (NPC), often referred to as
“childhood Alzheimer’s,” will host its eighth annual DART
to the Finish Charity Walk on Saturday, October 4,
2025, at Greenwich Point Park in Old Greenwich,
Connecticut. This accessible, two‑mile walk steps off
Saturday morning with check‑in beginning at 9 a.m. and
welcomes walkers of all ages and abilities. Advance
registration is $30 for adults 22 and older, $15 for
participants ages 10–21, and free for children under 10. Register
at dartevents.org or danasangels.org.
Registered walkers receive a commemorative T‑shirt,
refreshments and access to a referral‑reward program that
offers gift certificates for signing up additional family
members and friends to join in the Walk. Virtual walkers are
also welcome and can join in from anywhere in the world!
“We’re off to a good start this year thanks
to our initial Platinum and Gold Sponsors, Landis Partners,
the Weisenburger Trust and Trinity Church. But we still have
a good way to go to match last year’s total,” said Andrea
Marella, who co-founded DART with her husband Phil Marella.
“The DART to the Finish Charity Walk in 2024 raised almost
$170,000 — our goal is to beat that number this year. Our
efforts throughout the years have helped support three
therapies for NPC and get them across the FDA finish line in
2024. Those therapies are lifelines to NPC patients and
their families.”
The Marella’s founded DART in 2002 after two
of their four children, Dana (1993-2013) and Andrew, born in
1999, and now age 26, were diagnosed with the disease.
“On Saturday, October 4, we’ll walk again to
keep the crucial momentum going for pushing forward new
treatment options that are helping to save lives — for both
our son Andrew, who due to the advances DART has pushed
through has been undergoing treatment since diagnosis, and
is doing relatively well today — and the roughly 900 NPC
families worldwide.”
NPC is a genetic cholesterol‑storage disorder
that causes progressive neurological decline, often drawing
comparisons to “childhood Alzheimer’s.” NPC affects
movement, speech and cognition, and as a rare childhood
disease, was without an approved treatment for many years.
Thanks in part to two decades of DART‑supported research,
the FDA in 2024 cleared Miplyffa (combined with Miglustat)
and Aqneursa, the first therapies to slow progression.
Recent milestones underscore why continued
funding matters. On July 3, the Marella’s son Andrew was
able to add the FDA‑approved medication Aqneursa to his
treatment regimen. Andrew has had more than 178 spinal taps
with another medication, Adrabetadex (cyclodextrin), which
DART has also supported the research and clinical trials
for. Adding in Agneursa, an oral drug, is an illustration of
DART’s hard work that has helped expand access and treatment
options for other patients. At the National Institutes of
Health, DART has funded scientist Dr. Antony Cougnoux in
Forbes “Denny” Porter’s lab. Dr. Cougnoux is mapping how NPC
disrupts cholesterol handling in the brain to guide new
gene‑therapy strategies.
“Andrew and hundreds of other children are
alive today due to the important NPC and rare disease work
that DART and other organizations such as the Parseghian
Foundation have funded through charity events like the DART
to the Finish Charity Walk,” noted Phil Marella, co-founder
of DART and Andrew’s father. “Andrew, while still suffering
from some of the debilitating impacts of the disease, is
here today and able to work part-time, with support, at The
Prospector Theater and participates in family life with us
and with friends. For that, we are forever grateful to the
hundreds who have shown up year-after-year and helped raise
crucial funds for NPC research with us."
Since its founding 23 years ago, DART has
raised more than $6.5 million for NPC research. The
organization helped launch SOAR‑NPC, a collaborative
drug‑development program; funded a newborn‑screening pilot
now active in eight New York hospitals, and backed trials
that paved the way for today’s recent FDA approvals. NPC
science is also informing researchers on how diseases such
as Alzheimer’s, Parkinson’s, ALS and cardiovascular disease
could be treated, as NPC has a common denominator —
cholesterol storage — with those diseases.
For those interested in sponsoring the annual
DART to the Finish Charity Walk on October 4, please email info@danasangels.org for
details.
|