The fourth annual DART to the Finish charity walk benefitting Dana’s Angels Research Trust (DART) took place Saturday, September 25, 2021, in Greenwich, Connecticut, and virtually around the country. More than 325 individuals and organizations participated and helpedraised more than $130,000, which will go towards supporting crucial research into better treatments, clinical trials and genetic testing for Niemann Pick type C disease (NPC), a very rare childhood disease that is often referred to as children’s Alzheimers.
“We want to thank everyone who walked with us, both in-person and virtually, for the DART to the Finish charity walk,” said Andrea Marella, co-founder of DART. “The sun was shining, the temperature was perfect and every person there did so much to help us raise funds for finding better treatments for NPC.”
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 Niemann-Pick type C disease (NPC). Dana sadly passed away in 2013 at age 19. But Andrew, who turned 22 in June, is doing better due to being enrolled in a clinical trial to slow the progression of the disease.
“The critical need for funding potential NPC treatments and research has never been more important than it is today,” noted Phil Marella, co-founder of DART. “We have seen the success of certain treatments through clinical trials DART has helped fund. Results are in and we are working with the FDA to gain approval of these treatments so more children can benefit from their use. It is grassroots events like our DART to the Finish charity walk and others that happen throughout the country, that help move the needle when funding such crucial medical research. We know first-hand how a medical breakthrough can help a child. It has helped our son Andrew be with us today and we are pleased that these funds will help continue the development of other NPC treatments. Thank you to all who participated.”
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 are also helping launch newborn testing for NPC — the largest newborn pilot testing program in the United States — thanks to the leadership of Firefly Fund, 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, in conjunction with the New York State Newborn Screening Program, and will roll out this fall with the goal of 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 $5.6 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.