Walkers will gather at Greenwich Point Park on Saturday, Oct. 3, for the ninth annual DART to the Finish Charity Walk. The 2-mile fundraiser supports research into Niemann-Pick type C (NPC) disease, a rare neurological condition sometimes called "childhood Alzheimer's."
The walk is personal for Phil and Andrea Marella, the Greenwich couple who co-founded Dana's Angels Research Trust (DART) in 2002 after their daughter Dana was diagnosed with NPC at age 8. Dana died on July 12, 2013, from complications of the disease, according to the DART website. Their son Andrew, diagnosed in 2004 at age 5, is now 27.
Andrew is doing well. He walks with assistance, feeds himself and ushers at a Connecticut movie theater twice a week, according to a February 2026 Washington and Lee University alumni profile of Phil Marella. His treatment regimen includes two drugs the FDA approved in 2024 specifically for NPC, Miplyffa and Aqneursa, plus miglustat and monthly spinal infusions of adrabetadex.
"I'm just not sure I expected to see that in his lifetime, but that's what we've been able to help do," Phil Marella said in the February profile, referring to Andrew's progress.
When Dana was diagnosed, no treatments for NPC existed. The Marellas have run DART as an all-volunteer operation with no paid staff, out of a home office, raising more than $6.6 million for NPC research since 2002, according to Greenwich Free Press. In 2025 alone, the foundation funded nearly $300,000 in grants.
DART's current funding priority is a gene therapy trial at the National Institutes of Health (NIH), conducted with New York-based Apertura Gene Therapy. The foundation aims to fund a researcher for the trial at approximately $85,000 per year for two years. A separate treatment, adrabetadex, is under FDA Priority Review for infantile-onset NPC with a target action date of Nov. 17.
Phil Marella said keeping Andrew on a complex four-drug regimen remains challenging, reinforcing the need for treatments that are more effective and easier for families to manage.
Researchers involved in NPC work will attend the Oct. 3 walk to discuss their progress.
Registration is $30 for ages 22 and older, $15 for ages 10 to 21, and free for children under 10. A virtual walker option is $30. The walk begins at 9 a.m. Residents can register at dartwalk.danasangels.org.
Upcoming community events:
- Saturday, Sept. 12: DART booth at the Health Wellness & Lifestyle Expo, Harbor Point Boardwalk, Stamford, 10 a.m. to 5 p.m. (free admission)
- Saturday, Oct. 3: DART to the Finish Charity Walk, Greenwich Point Park, Old Greenwich, 9 a.m.
