MYOTUBULAR MYOPATHY & CENTRONUCLEAR MYOPATHY

 ArtWorks Express Yourself-NJ performing art exhibition

The room is packed.  The excitement in the air is palpable.  The APC Rhythm a capella group from NYU take the stage.  The auditorium at the Montclair Art Museum fills with the symphony of their voices and the performance begins.  In the minutes leading up to the live performances, young adults and children with chronic illnesses and their siblings, friends and families gathered.  They came with their braces, wheelchairs, breathing tubes, scars or with scarves covering their heads, their hair lost to cancer.  Whatever way they arrived November 16, they all came with the excitement of being able to share and express themselves through art. 

The ArtWorks ® Express Yourself – NJ is a creative and performing art exhibition featuring pieces by children and young adults contributed from 9 NJ hospitals.  It also includes work from the siblings of chronically ill children.  The live performances from children ages 3 to 16 brought the audience on an emotional roller coaster from laughing to being moved to tears.   The event included a lively dance performance by Meaningful Movements, an organization committed to offering developmental, dance and exercise classes for both children and adults of all abilities.

The event was made possible through the creative minds of its participants, the support of 9 local hospitals, and the ArtWorks ® Naomi Cohain Foundation (www.artworksfoundation.org), and the Church & Dwight Employee Giving Fund, Inc. 

Pine Brook resident, Adam, age 7, had a chance to display his art and to perform a song that he wrote.  Adam was hospitalized at St. Barnabas Medical Center last summer from an illness complicated by his rare muscle disease, Centronuclear Myopathy (CNM).  In addition to Adam, a handful of children from around the world suffer from CNM.  This disease causes weakness of the muscles throughout the body, including the muscles needed for breathing, blinking and chewing food.   People affected by this disease also experience other medical complications such as scoliosis (curvature of the spine), liver problems and more.

While he was hospitalized, Adam had the opportunity to work with the wonderful child-life team members, Bethany Garvin and Melissa Cook.  With their support, Adam created some art and music that helped to take his mind of the medical treatments he was getting.   Adam said he loved being able to participate in the ArtWorks program because it allowed him to share his art with others. 

The Foyes understand the magic that comes when chronically ill children and their families unite.  A family conference is set for 2009 in order to unite, educate and connect CNM families together.  The Foyes have begun a campaign to raise $30,000 to connect families with CNM.    You can make a donation to unite these families by sending a check made out to “MTMRG” a non-profit charity. Mail donations to Sarah Foye, Treasurer MTMRG, 38 Buckingham Circle , Pine Brook , NJ 07058 .  Please use your cancelled check for your tax receipt.  The Foyes anticipate the CNM family conference will be as special as the ArtWorks ® event.   

At the close of the performance, the performers took their final bow with the whole room swaying to the words of the song “Seasons of Love” from Rent.  The lyrics captured the spirit of the event.  How do we measure the minutes of the year?  “Laughter? Strife?”  Yes, everyone in the room had had their share. The answer is simple, we “Measure in LOVE.”   Whether it was as an audience member or as an exhibitor/performer, all who attended this event left with an appreciation for expressing both the struggles and beauty of being alive and this November that is something to be truly thankful for.