Dana’s Angels Research Trust (DART), the nonprofit dedicated to funding medical research, education and treatment of the rare childhood disease Niemann-Pick Type C disease (NPC), often referred to as “childhood Alzheimer’s,” and other similar genetic diseases, is hosting its sixth annual DART to the Finish Charity Walk, on Saturday, September 30, at 9:00 a.m., at Greenwich Point Park in Old Greenwich. This family-friendly and accessible two-mile walk is $30 for adults (22+), $15 for 10-to-21 years old, and free for children 10 and younger. Virtual walkers from anywhere in the world can join and register with a $30 donation. To learn more and register, visit danasangels.org or dartevents.org.
“We are so excited to be hosting our sixth annual DART to the Finish Charity Walk on Saturday, September 30th,” said Andrea Marella, co-founder of DART. “The Walk brings together friends, family, sponsors, donors and the whole community for a beautiful morning at Greenwich Point Park where the money raised goes directly to support crucial NPC research. We thank everyone who has supported us these past 21 years since we founded DART in 2002 after the NPC diagnosis of our daughter Dana and subsequently our youngest son Andrew.”
Dana Marella was the original inspiration for DART after she was diagnosed with NPC at the age of eight. Once an energetic, happy little girl, Dana eventually lost all her abilities and was confined to a wheelchair. She was unable to walk, talk, had a feeding tube and received a tracheostomy. Despite severe challenges and numerous hospitalizations, she never lost her sweet nature, always reaching to hold a hand, making her deeply loved by all who knew her. Her strength and perseverance were a constant inspiration and taught everyone around her the true meaning of life and to appreciate each day. She fought a courageous battle for 12 years after she was diagnosed. Sadly, she passed away in 2013, just 11 days shy of celebrating her 20th birthday.
In 2004, just two years after Dana was diagnosed, the Marella’s youngest child Andrew was also diagnosed with NPC at the age of five. Andrew recently celebrated his 24th birthday in June and is faring much better, due to taking part in clinical trials that DART has helped fund and spearhead. Today Andrew proudly works at the Prospector Theater in Ridgefield, Connecticut, as an usher at the venue, which is known for providing competitive and inclusive employment for adults and teens with disabilities.
“Andrew has been taking part in a clinical trial administered by the NIH and is on two different medications — cyclodextrin and miglustat – which have helped hold at bay certain aspects of the disease,” noted Phil Marella, co-founder of DART and Andrew’s dad. “DART has been solely focused on finding better treatments and ultimately a cure for NPC. When Dana was diagnosed, little was known about NPC and there were no treatments, no clinical trials and no hope. Most children with NPC passed away in their early teens. Today, with the help of DART and our partners, we have changed that fate.”
DART has helped fund eight drug trials, developed the first NPC diagnosis blood test for newborns, and is working with the FDA for treatment approvals. NPC affects roughly 200 children in the U.S., leading to shortened lives, however, DART is making strides in changing this narrative. Research funded by DART may also benefit those with Parkinson’s, HIV/Aids, Ebola, heart disease, Alzheimer’s, etc. Two recent FDA-approved medications for Alzheimer’s emerged from understanding a genetic marker shared with NPC patients. The next step for NPC research is looking at more than 20 different biomarkers that can help dictate a better path for treatment.
Besides funding trials, DART is part of an NPC Therapy Accelerator program, aiding 12 companies in creating treatments. Three are nearing FDA’s final review stages. The U.S.’s most extensive newborn pilot testing, led by Dr. Melissa Wasserstein at The Children’s Hospital at Montefiore, was launched due to the DART and the NPC community — 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. The ScreenPlus testing is screening 175,000 newborns and is 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 a brutal disease,” noted Phil Marella. “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 21 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 Charity 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.
