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 8th 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.
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
