Dana’s Angels Research Trust (DART) is honoring its 20th anniversary this year and holding its fifth annual charity walk, DART to the Finish, on Saturday, September 24, 2022, at 8:00 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 free for children 10 years old or younger. 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.
The DART to the Finish charity walk raises funds for the Greenwich, Connecticut-based nonprofit Dana’s Angels Research Trust, which is focused on funding research into the rare childhood disease Niemann-Pick type C (NPC), which is often referred to as childhood Alzheimer’s. Dana’s Angels Research Trust was founded in 2002 by Andrea and Phil Marella of Greenwich after two of their four children, Dana and Andrew, were diagnosed with NPC. Dana sadly passed away in 2013 at age 19. But Andrew, who turned 23 in June, is doing better due to being enrolled in a clinical trial to slow the progression of the disease.
“DART has been solely focused on finding better treatments and ultimately a cure for NPC for the past 20 years,” said Andrea Marella, co-founder of DART. “When our daughter Dana was first diagnosed, so little was known about NPC. There were no treatments, no clinical trials, no hope. Most children with NPC passed away in their early teens. Today, with the help of DART, we have changed that picture. DART and its partners have spearhead eight clinical drug trials and developed newborn blood tests for early diagnosis of NPC. The NPC community is currently working with the FDA on approving two of the treatments DART has helped fund, which have benefitted our son Andrew. In the U.S. alone, there are now 120 children enrolled in clinical trials and 50 more international patients. These advancements and progress have only been possible from the incredible support of our wonderful DART community, here in Greenwich and throughout the world, who have come together to support funding that is truly saving lives.”
DART 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, two of which are in the later stages of regulatory review with the FDA. DART and the NPC community also launched the largest newborn pilot testing program in the United States — 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, DART and others. The ScreenPlus testing is being led by pediatric genetic expert Dr. Melissa Wasserstein at The Children’s Hospital at Montifiore, 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 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, often becoming fatal in the teenage years. But, DART is helping to change that fate. As a nonprofit organization, DART’s events like DART to the Finish, 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.
“NPC is a brutal disease,” noted Phil Marella, co-founder of DART. “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 20 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 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.