Dana’s Angels Research Trust (DAR), the non-profit dedicated to raising crucial funds for the rare childhood Niemann-Pick type C disease (NPC), often referred to as “children’s Alzheimers,” is holding its inaugural DART Walk to the Finish on Saturday, October 6, 2018, at Greenwich Point Park in Old Greenwich, Connecticut.
Scott Shannon, host of WCBS-FM’s “Scott Shannon in the Morning” and “Scott Shannon Presents America’s Greatest Hits,” will kick-off the Walk. Those interested in participating may register in advance online at danasangels.org or on-site beginning at 8:00 a.m., Saturday, October 6.
“NPC is a rare and fatal, cholesterol storage disease affecting children and is often referred to as children’s Alzheimer’s,” noted Andrea Marella, one of DART’s co-founders. “DART was founded after we sadly learned that our daughter Dana had the disease and then a few years later, we discovered our youngest son Andrew also had it. Dana sadly passed away at the age of 19 in 2013. Andrew, who just turned 19 in June, is still battling the disease and is suffering from the effects, but doing better as he has been in two clinical trials that DART has helped fund.”
Most children who suffer from NPC die in their early teens from the disease, but DART is helping to change that fate. As an all-volunteer organization, funds raised at DART events are channeled directly into supporting pivotal NPC research - research that may also help millions of people suffering from HIV/Aids, Ebola, heart disease, stroke, Alzheimer’s disease and other disorders that appear to be related to cholesterol.
The event will feature music and dancing, face painting and food provided by Joey B’s. The Walk will be kicked-off by WCBS-FM radio personality Scott Shannon. Prizes will be awarded to top fundraisers including a one-year membership to the YMCA (top adult fundraiser); running shoes and gift cards from Threads & Treads, gift cards to Rinaldi’s and Chicken Joe’s (top 11-21 year old fundraisers); and a YMCA party with use of the Olympic pool for up to 30 guests (top child fundraiser under 10 years old).
And the party doesn’t stop after the Walk! DART has been fortunate to have the support of local Old Greenwich, Riverside, Cos Cob and Greenwich restaurants and retailers who are participating in the DART Shop & Share day with a percentage of sales on October 6 being donated to DART (just mention the DART walk). Participants include: Anna Banana (Old Greenwich), Asiana (Greenwich), Back 40 Mercantile (Old Greenwich), Beach House Cafe (Old Greenwich), Caren’s Cos Cobber (Cos Cob), Chicken Joe’s (Cos Cob), Claudette (Old Greenwich), Fjord Fish Market (Cos Cob), Fred (Old Greenwich), Housewarmings (Old Greenwich), Lily (Old Greenwich), Little Pub (Cos Cob), Originals (Old Greenwich), Pomodoro (Riverside), Splurge (Greenwich) and Sushi Soba (Old Greenwich).
Special thanks to the generous sponsors and friends who have helped make this event possible: Jusko Wealth Management Group, The Children’s Hospital at Montefiore, the YMCA, Threads & Treads, Chicken Joe’s, Rand Insurance and Primary Home Care LLC.
DART typically holds a large fundraiser every other year and has hosted musical performers such as Country Music stars Hunter Hayes, Martina McBride, and Gladys Knight, Kenny Loggins, The Beach Boys, Frankie Valli, Natalie Cole, Smokey Robinson, America, Richard Dreyfuss and Rob Mathes, who have all performed at the DART Gala Benefits. Past supporters and attendees at DART’s annual fundraisers include Kathie Lee and Frank Gifford, Joy and Regis Philbin, Cheryl and Ron Howard, Martin Scorsese, Sonny Grosso, Phil Ramone, Richard LaGravenese, Florence Henderson, Chynna Phillips, Billy Baldwin and Kenny Loggins and Michelle Phillips of The Mamas and The Papas fame. This the first year DART is holding a Walk. 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 WALK TO THE FINISH, visit danasangels.org, on Facebook @danasangels, Instagram @danasangelsNPC and Twitter @danasangels.