Greenwich nonprofit gives Guardian Angel Award to Parseghian family

Dana’s Angels Research Trust, the Greenwich based nonprofit that funds research into the rare disease Niemann-Pick type C (NPC), a fatal, cholesterol storage disease affecting children, announces the recipient of the 2017 Dana’s Angels Guardian Angel Award — the Parseghian family and the NPC charity they founded — the Ara Parseghian Medical Research Foundation (now called the Ara Parseghian Medical Research Fund at Notre Dame (APMRF). Cindy and Michael Parseghian will be accepting the Dana’s Angels Guardian Angel Award at the Dana’s Angels Research Trust Annual Gala and Benefit Concert on Saturday, Nov. 11, at the Palace Theatre in Stamford, where the headline performer for the evening will be Country Music star Hunter Hayes.

Cindy and Michael Parseghian have endured what no parent should — the loss of three of their four children to Niemann-Pick type C, a debilitating disease that steals the life of a child usually before the age of 15. This diagnosis, often called “children’s Alzheimer’s,” however, did not stop the Parseghian family from turning tragedy into something positive with the creation of the Ara Parseghian Medical Research Foundation in 1994, named after Michael Parseghian’s father, Ara Parseghian (1923-2017), the famed Notre Dame football coach and grandfather of their children. The Ara Parseghian Medical Research Foundation has raised over $48 million for NPC research and has been extremely instrumental in pushing forward NPC research and opportunities for other NPC families in clinical trials.

The Dana’s Angels Research Trust Guardian Angel Award was started in 2011 and is given annually to organizations or individuals that have been committed to finding a cure for Niemann-Pick type C disease. Past recipients of the Dana’s Angels Research Trust Guardian Angel Award include Kathie Lee and Frank Gifford, Dr. Gregory P. Crawford, former Dean of the College of Science at the University of Notre Dame and current Miami (OH) University President, and Dr. Forbes Porter of the National Institutes of Health, who will be presenting this year’s award.

“We are honored to have Cindy and Mike Parseghian with us in November to accept the Dana’s Angels Guardian Angel Award,” said Andrea and Phil Marella, founders of Dana’s Angels Research Trust. “It is through the work of organizations like the Ara Parseghian Medical Research Foundation that we will someday find a cure for NPC. The efforts of the Parseghian Foundation have been and remain critical to the amazing progress in understanding NPC.”

Dana’s Angels Research Trust (DART) also raises funds for the treatment of NPC. Two of the Marella’s four children, Dana and Andrew, were/are afflicted with NPC. Sadly, Dana passed away in 2013 at the age of 19. Andrew, who is 18 today, the Marella’s youngest child, is battling seizures and has walking and swallowing issues. However, Andrew has benefited from two experimental medications and has participated in the latest drug trial for almost four years, first conducted by the NIH and now managed by Sucampo Pharmaceuticals, Inc.; all due in large part to DART’s efforts.

Most children who suffer from NPC die in their early teens, but DART and the Ara Parseghian Medical Research Foundation have helped change that fate. As an all-volunteer organization, Dana’s Angels Research Trust uses more than 95% of the funds raised to go 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.

This is DART’s 15th year as a nonprofit focused on Niemann-Pick type C disease research.  To date, DART has raised almost $4.25 million toward the search for 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.

Throughout the years, DART has been blessed to have the support of incredible performers for its cause, with Country Music star Hunter Hayes headlining this year’s Gala Benefit Concert and previous performances by Martina McBride, 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 and Billy Baldwin.

This year’s honorary co-chairs are again award-winning singer/song writer Kenny Loggins and Michelle Phillips of The Mamas and The Papas fame.

The DART Gala will kick off with an elegant cocktail reception, featuring a Rao’s pasta bar, with silent and live auctions. Gala Reception/Concert tickets start at $350 and will be available by invitation and online at DanasAngels.org. Concert-only tickets start at $45 and are available to the public through the Stamford Center for the Arts Box Office at PalaceStamford.org or by calling 203-325-4466.

Cindy Parseghian, Hannah Storm and Andrea Marella from a past DART Gala event.

Cindy Parseghian, Hannah Storm and Andrea Marella from a past DART Gala event.

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