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Newspaper coverage for MTM/CNM

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  • pinksarah21
    Hey, our family and one other were featured in the Daily Record newspaper yesterday.
    Message 1 of 1 , Sep 3 1:58 PM
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      Hey, our family and one other were featured in the Daily Record
      newspaper yesterday.

      http://www.dailyrecord.com/apps/pbcs.dll/article?AID=/20060902/COMMUNITIES/609020319/1203/NEWS01

      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
      done."

      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@....


      PHOTO
      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.

      PHOTO
      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.
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