Charcot Marie Tooth Disease - CMT Disease - Hereditary Neuropathy

 
Meet Arlene.  She’s nine years old, feisty, and trying to navigate the 4th grade with CMT and new leg braces.  She’s also starring  in a new children’s book, Arlene on the Scene.   Worried that people will pity her and see her only as “The Girl With The Leg Braces,” Arlene sets out to prove that she is just like everyone else by running for student government. What Arlene doesn’t realize is that everyone has a part of themselves some might consider “different,” and there is more to her classmates than meets the eye. Together with her friends, Lauren, Sheila, and Jessie, Arlene runs an exciting campaign and learns important lessons about differences, acceptance, and seeing people for who they really are.
 
Arlene On The Scene was written by Carol Liu and Marybeth Caldarone, founder of Grace’s Courage Crusade (pictured with her daughter, Grace).   Longtime friends, Carol and Marybeth met in college.  Even though Marybeth was already in a wheelchair by that time, she didn’t know that she had CMT.  It wasn’t until her daughter, Grace, began exhibiting symptoms at the age of 3, that Marybeth finally received a diagnosis of Charcot Marie Tooth disease.  Much like Arlene, Marybeth wasn’t about to let CMT stop her, so she founded Grace’s Courage Crusade, raising over $150,000 for CMT research in the past four years.
 
Together, Carol and Marybeth wrote Arlene On The Scene in order to show people what life is like for people living with CMT.  Marybeth wanted to write a children’s story for Grace and all of the children with CMT.  Once the book was completed, they approached HNF in August about helping fund its publication, and we gladly said yes.  When we first read Arlene On The Scene, we fell in love with the story of the gutsy little girl determined to prove to others that she was more than her CMT.   It is an important message for any child with CMT and a great way to raise awareness about Charcot Marie Tooth disease.
 
HNF isn’t the only organization that is glad Arlene is on the scene, however.  We recently received a generous contribution from the CMT Foundation to support the cost of publishing the book.  The CMT Foundation is a non-profit organization founded by J.D. Griffith following the death of his sixteen year-old daughter, Marah, on Christmas Day in 2001.  Marah, who suffered from CMT Type 2, experienced breathing complications on a visit to her aunt for the holidays and went into respiratory arrest.  Since her death, J.D. has tirelessly devoted himself to raising awareness and funds for research for Charcot Marie Tooth disease.  Moved by the story of the little girl, J.D. said that it reminded him of Marah.  “Reading a story about a fourth grade girl who wears braces almost brought me to tears,” said J.D.  “I went through that with Marah and it was heartbreaking at times because the kids made fun of her.”  He continued, saying, “I think this book will do a great deal not only to help children deal with their CMT, but also to bring awareness and raise empathy for any people who are living with a disability.”  J.D. also shares Carol and Marybeth’s passion for funding research.  “Anything I can do to help research, I want to do,” he said, referring to the book’s support of HNF’s TRIAD program.  He is looking forward to the release of Arlene On The Scene.  “It’s a good book and something that is needed.”
 
Arlene On The Scene will be published through Greenleaf Book Group, a publishing house that allows authors to retain nearly seven times the royalties offered by traditional publishers.  The initial investment for publication is twenty thousand dollars, and after that, the project becomes self-sustaining.  Together, HNF, Carol, and Marybeth set a twenty thousand dollar goal and a publishing deadline of September 2010.  As of January 18, 2010, we have raised over $14,000 and are still going strong.  To donate to support the publication of Arlene On The Scene, please donate here.  It is a gift that will keep on giving, because Carol and Marybeth have generously offered to donate 100% of the proceeds to HNF’s TRIAD program!
 
To read an excerpt from Arlene On The Scene, please visit here.
To support Arlene On The Scene, please donate here.