DART walk raises funds to fight devastating childhood disease
GREENWICH — In their family’s continuing battle against a rare and deadly disease, Greenwich residents Phil and Andrea Marella are getting ready to take a new step.
To raise money and awareness in the fight against Niemann-Pick type C disease, they will host the DART To The Finish charity walk at Greenwich Point. Sign-in will begin at 8 a.m. Saturday at the clambake area, and the walk will step off at 9.
The family founded Dana’s Angels Research Trust, or DART, a nonprofit that has previously raised funds through glitzy galas. But this year they wanted to get back to their roots with a community event.
“We want to be able to do both,” Phil Marella said, reflecting on the nonprofit’s fundraising events over the years. “We want those bigger events, but we also want to have events for people who can’t participate in the galas and still want to support us. We want to keep the community involved because they have been so supportive and so important to the progress we’ve made.”
DART To The Finish was the name of the first event the family held in 2003 at Parkway School to fight Niemann-Pick type C disease, which has been called children’s Alzheimer’s. In the fatal genetic metabolic disorder, cholesterol and other fatty substances accumulate in the spleen, liver, lungs, bone marrow and brain.
The disease left their daughter, Dana, in a wheelchair and no longer able to talk before her death at the age of 19 in 2013. Their son, Andrew, who is now also 19, also has it and has been in a clinical drug trial for five years that appears to be having an impact.
“Andrew certainly has ups and downs,” Andrea Marella said. “The downs often come immediately following his infusion every two weeks, but then he bounces right back and he walks well, with assistance, of course. He eats well. He talks. It’s unlike the slow downward we had before.”
“This drug is clearly protecting a good part of the brain,” Phil Marella said. “That’s an important first step, and we will build from there. But this is a great start.”
If the drug trial for VTS-270 continues to go well, Marella said, the drug company will present its data to the U.S. Food and Drug Administration. By the end of the first quarter of 2019, it could be the first drug approved for Niemann-Pick type C disease, a critical first step in building a drug cocktail to treat it.
Funding from DART supports research into drug treatments and multiple areas of gene therapy and gene editing. A breakthrough could in the treatment of Niemann-Pick type C disease could also help in the fight against Parkinson’s disease and Alzheimer’s disease.
In addition to raising funds for research, the goal of the Greenwich Point walk is to educate. Markers along the course will contain facts about Niemann-Pick type C disease.
“When people support our cause, they should know this is not just about finding a cure for Niemann-Pick type C disease,” Andrea Marella said. “It can lead to such wonderful treatments.”
Supporters can register for the walk at www.danasangels.org. The cost is $25 for adults and $10 for youths. Children under the age of 10 are free.
Participants are also urged to find additional sponsors, with prizes awarded to those who raise the most money. The adult with the highest total raised will get a one-year family membership to the YMCA of Greenwich; the youth between 11 and 21 will get running shoes from Threads and Treads, a $50 gift card to Rinaldi’s and a $50 gift card to Chicken Joe’s; and the child who raises the most will get a party for up to 30 guests at the YMCA, including use of the Olympic pool.
In previous years, DART hosted galas with musical performers such as Smokey Robinson, the Beach Boys, Frankie Valli, Gladys Knight, Greenwich’s own Rob Mathes and country star Hunter Hayes. DART plans to alternate the galas with family-friendly, community-focused events such as the walk.
This weekend’s walk will be kicked off by legendary WCBS-FM DJ Scott Shannon, a longtime friend of the Marella family and a major supporter of DART.