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Celebrity Philanthropy News 2  3

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Dana's Angels Benefit Concert


 
ROB MATHES PERFORMS FOR
HOMETOWN CROWD FOR
DANA’S ANGELS BENEFIT CONCERT
Greenwich Concert Raised Funds and Awareness for
Niemann-Pick Type C Disease (NPC)

 

Rob Mathes during the DART benefit concert.

Rob Mathes during the DART benefit concert.
Photo by: Elaine Ubina.

 


Acclaimed musician and Grammy nominated music director Rob Mathes, filled the auditorium of his high school alma matter recently when he took to the stage and returned to Greenwich High School to perform a benefit concert in front of a crowd of about 650 for the recent fundraiser held in support of DANA’S ANGELS RESEARCH TRUST (DART).  DART is a charity dedicated to funding medical research, education and care, for the treatment or cure of Niemann-Pick Type C disease (NPC).  Mathes, who was the music director for Obama’s Inaugural We Are One concert in Washington, DC, in January, and has been the music director of the Kennedy Center Honors for the past six years, performed with his all-star band, including Will Lee of the David Letterman Band and the Fab Faux, Shawn Pelton of Saturday Night Live, Billy Masters, a renowned guitarist, a top-notch six piece horn section, many of which have toured with the Rolling Stones, Chris Coogan on keyboards, and vocalists Vaneese Thomas and Ian Cron. Kathie Lee and Frank Gifford were the Master of Ceremonies for the event.  This was one of the most successful fundraisers for DART and had the highest attendance of any of its events.  The concert raised approximately $80,000 for DART and its research, with some further donations anticipated.
 
DART was founded by Greenwich residents Andrea and Phil Marella.  Two of the Marella’s four children, Dana and Andrew, have Niemann-Pick Type C disease (NPC).  The Marellas are in a race with time to try and find a treatment for NPC and fundraisers such as the Rob Mathes Benefit Concert bring them a step closer to funding crucial research that can help not only their children, but other children suffering from NPC and even adults that have Alzheimer’s, heart disease and possibly HIV/AIDS, in all of which cholesterol may play a key role. NPC is a disease caused by the body’s failure to properly metabolize cholesterol.  The Marella’s two children, Dana who is 15, and Andrew who is 9, are on an experimental medication called Zavesca, which is helping keep the disease somewhat at bay for them both, but Dana did not receive the medicine until her disease was more advanced.  Dana is now confined to a wheelchair, suffers seizures, and uses a feeding tube.
 
“Our goal for the next 18 months is to have a cocktail of various drug treatments that can be used in clinical trials for NPC,” noted Phil Marella, Dana and Andrew’s father. Marella noted that DART has put much of its efforts toward an effort called SOAR – Support of Accelerated Research – a venture among DART and three other NPC family foundations and four distinguished medical research labs that are collaborating to develop an effective drug treatment for NPC and other cholesterol-related diseases.  DART also works with the Ara Parseghian Medical Research Foundation, founded by the former Notre Dame head coach, and has funded numerous research grants with the Parseghian Foundation, most recently three neuroscience fellowships.
 
Rob Mathes, when he met the Marella family, knew he had to do something to help them raise funds for DART and NPC.  “The Marellas are passionate in pursuing a cure for what is destroying Dana and threatening Andrew,” noted Mathes.  “What I can do through music is bring people together to learn about this disease and throw their support behind the Marellas, by witnessing first hand the fierce love, dedication and intensity the Marellas have for finding a cure.”
 
“We’ve known the Marellas for years and their daughter Dana is the same age as our daughter,” noted Kathie Lee Gifford, during her introduction to the concert.  “The disease that has plagued Dana and Andrew could happen to any family and is by no fault but one’s DNA.  This injustice is difficult to understand, so we try to direct our frustration into something positive.  Simply loving this family is something we can all do to alleviate some of their burdens, but we can also contribute financially to DART and help with the research into this deadly disease.  There’s hope when faith, money, science and love come together.”
 
Mathes performed many of his original songs that struck a chord with the evening – songs such as Tiny Hands, which he wrote for one of his daughters; End of the Day, She’s With Me, Although It is the Night, and Everywhere, a new song Mathes just wrote specifically for a child his family knows that has been diagnosed with brain cancer, and will be featured on Mathes’ new CD he is currently working on that will be out next year, called Wheelbarrow.  He also rocked the show with great jazz and blues tunes and even performed a little Dylan with Dignity and some U2.
 
Dana’s Angels Research Trust (DART) was founded by Phil and Andrea Marella and is a charity dedicated to funding medical research, education, and care for the treatment or cure of Niemann-Pick Type C disease (NPC) and other similar genetic diseases. NPC is often called children’s Alzheimer’s. NPC is a genetic metabolic disorder in which harmful quantities of cholesterol and other lipids accumulate in the cells of the body such as the spleen, liver, lungs, bone marrow, and most dramatically the brain.  Since the nerve cells are unable to process that cholesterol, premature ‘death’ of these cells results.  This brain involvement can be extensive. Although children and some adults worldwide are afflicted, research has been extremely limited primarily because of insufficient funding due to a small affected population and a lack of public awareness.  Currently, children with NPC rarely live past their early teens, and there is no cure for NPC. Today there are limited treatment options with experimental therapies and medications being tried with the hope of progress.  DART aims to help all of those, adults and children, suffering from the disease of NPC.  Their efforts may also help millions of people suffering from heart disease, strokes, Alzheimer’s disease and other disorders that appear to be related to the metabolism of cholesterol, including HIV.
 
To learn more about DART or to make a donation, visit www.danasangels.org <http://www.danasangels.org>  or call 203-861-2063.  Donations can also be mailed to:  Dana’s Angels Research Trust, 15 East Putnam Avenue, #117, Greenwich, CT 06830.
 
www.danasangels.org

 

 

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