Newspaper coverage for MTM/CNM
- Hey, our family and one other were featured in the Daily Record
Sons battling neuromuscular diseases
BY VIDYA PADMANABHAN
DAILY RECORD (FYI, this is a newspaper in Northwestern New Jersey)
MONTVILLE -- Adam Foye was 13 months old when his parents received the
news no parent wants to hear: that he suffered from centronuclear
myopathy, a rare neuromuscular disorder, and "there was nothing to be
Adam is now 5 years old, and his parents, Sarah and Pat Foye, are
fighting against time to help find a cure for his condition. Most of
the Foye's efforts have taken the form of raising awareness and funds.
This April, they worked to raise money for the Joshua Frase
Foundation, an organization set up by NFL player Paul Frase and his
wife, and named for their son, who is afflicted with the same
condition as Adam Foye.
Sarah Foye also raised $8,000 at a fundraising walkathon this spring,
along with Jeanmarie Falco of Bloomingdale, another mother Sarah met
at a support group for sick children and their families. Foye and
Falco will present the check to the Muscular Dystrophy Association at
the Labor Day MDA telethon, to be telecast on WWOR-9 in New York City.
The two women are also pursuing other projects to help find a cure for
their children's conditions. While the Muscular Dystrophy
Association's aim is to provide support for "43 neuromuscular
diseases," conditions like centronuclear myopathy and Leigh's
syndrome, which Patrick Falco, 6, is afflicted with, are not
dystrophies, and are under-funded, Sarah Foye said.
The Foyes are therefore engaged in creating an endowment at the Boston
Children's Hospital to fund research that can potentially cure their
son, and Jeanmarie Falco is trying to set up a power wheelchair soccer
league in northern New Jersey.
Sarah and Pat Foye, casting about for a way to contribute, found their
mission when they met Boston Children's Hospital's Dr. Alan Beggs, who
is researching centronuclear dystrophy. "It was a life-altering moment
for us," Sarah Foye said.
One gene that causes the disease was isolated last November. Another
had been isolated earlier.
"Unfortunately, Adam doesn't have either of those genes,"Sarah Foye said.
Her hope remains undiminished. Adam suffers from respiratory problems
and from a condition that makes his bones brittle. But all things
considered, "he's doing great," she said. "Fifty percent of children
with centronuclear myopathy die by 2. But Adam's doing great."
Jeanmarie Falco's Power Soccer League is also coming along well, and
she hopes to have a kick-off in Montville in November, she said.
"This is the first sport in which they can be independent," she said.
"They are cognitively very smart. They only have a physical problem.
This is one way that they'll be like a typical kid."
The Power Soccer League will feature four children in power
wheelchairs, and games will be played on indoor basketball courts. So
far, 14 children have signed on, Falco said.
Both efforts need support, monetarily and otherwise.
The Boston Children's Hospital needs children with centronuclear
myopathy to volunteer as research subjects. Monetary contributions can
be made at www.childrenshospital.org/giving.
The Power Soccer League needs a volunteer soccer coach.
For more information, and to contribute, e-mail myopathy@....
BOB KARP / DAILY RECORD
Jeanmarie Falco, left and son Patrick of Bloomingdale, who has Leigh's
disease and Sarah Foye and her son, Adam, who has centronuclear
myopathy, of Pinebrook are going to the Muscular Dystrophy Association
Telethon, to be telecast on WWOR-9 in New York City, to present an
$8,000 check. Neither child has muscular dystrophy.
BOB KARP / DAILY RECORD
Adam Foye, 5, who has centronuclear myopathy runs across his yard.
Adam suffers from respiratory problems, and from a condition that
makes his bones brittle. His mother, Sarah says Adam is in great
shape. 'Fifty percent of children with centronuclear myopathy die by
2. But Adam's doing great,' she says.