Greenwich family adapts its fight against rare disorder
GREENWICH — A Greenwich family that has worked for decades to help their children battle Niemann-Pick type C disease, a rare genetic disorder with no cure, has adapted their largest fundraiser for the coronavirus era.
Phil and Andrea Marella lost their daughter Dana to the disease, which is characterized by the body’s inability to transport cholesterol and other fatty substances inside of cells. But clinical trials of new drugs have slowed the progression of the disease in their son, Andrew.
“Our story has been a sad one, but we remain positive and hopeful,” Andrea Marella said. “People really feel for us as a family, having lost our daughter after 12 years of fighting for her and now having to battle to save our son. We touch a lot of people with our story.”
The Marellas formed the nonprofit Dana’s Angels Research Trust to support research into a cure. And this week, they will hold their latest fundraiser — the DART To The Finish Charity Walk — with a few changes due to the pandemic.
But instead of gathering for a large charity walk as in years past, this year’s walk will be held virtually from Sept. 26 through Oct. 3. Participants can join the effort anytime and anywhere by taking a 2-mile walk at the beach, around the neighborhood or even on a treadmill.
The funds raised will support the medical advances the Marella family is hoping can save their son and other children with the rare and deadly disease.
“DART is an all-volunteer effort and our overhead is as minimal as it possibly can be,” Phil Marella said. “We just try to get the money out with our fellow family-founded foundations around the country to fight Niemann-Pick. We want to get the money in the hands of the researchers.”
Funding for research into rare diseases can be scarce, so families such as the Marellas and others are committed to the cause to support research and clinical drug trials that could lead to medical breakthroughs.
The family said they have had loyal sponsors and donors for years, who have stood by them, even during the pandemic. “It has made a big difference,” Andrea Marella said.
Dana Marella lost her battle with Niemann-Pick type C in 2013 at the age of 19. But Andrew Marella, who turned 21 in June, is beating the odds. The drug trials he is now participating in have slowed the disease’s progression.
The family hopes that soon, perhaps as early as next spring, two drugs used to treat the disease will have approval of the U.S. Food and Drug Administration.
The research into treating Niemann-Pick type C disease could also help people with HIV/AIDS, Alzheimer’s disease, Parkinson’s disease, Ebola and even heart disease, which all are related to cholesterol, just like NiemannPick type C disease, the Marellas said.
In 2019, the charity’s walk at Tod’s Point raised nearly $140,000, they said. With supporters able to take part in the virtual event in safe ways at their own convenience, the family is hoping for success in 2020.
Phil Marella said they considered holding a walk with masks and social distancing. But ultimately they decided this was the best way to proceed.
“We’ve always had a virtual option so, for example, if we had a supporter in California or Colorado who wanted to walk in their own neighborhood they could sign up and do that, and this way gives us an opportunity to explore some of the tools at our disposal,”
he said.
“Hopefully it’s a wonderful learning experience so next year we can do both and have a few hundred people walk locally and a few hundred people walk all over the country and maybe all over the world.”
Registration is $25 for adults and $10 for youth ages 10 to 21. All registered participants get a DART to the Finish T-shirt and will be eligible for $25 or $50 local
restaurant gift certificates when they get friends to sign up, too.
“No donation is too small,” Andrea Marella said. “We’re grateful for any level of donating. It all adds up.”
To sign up for the event and learn more about DART’s efforts, visit www.danasangels.org or runsignup.com/Race/CT/Greenwich/DARTToTheFinish.