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