Welcome to CMT Kids!

Hi! I am Arlene!


Hi, I'm Arlene! And while there is a lot of stuff on this website, this is the scene for us kids! There's a whole book about me being on the scene, and now there's a website too (well, ok, part of a website). I'll be posting stuff here whenever I can, in between homework, piano, horseback riding, and bothering my brother, Chris. Mom is shouting at me to add "cleaning my room," but I'm going to pretend like I don't hear her for the moment because I want to tell you more about our kids section

I'll put some articles below for you and your parents to look at. They're only about kids stuff, so don't worry, they won't be boring. You'll also see articles written by me - it's called a BLOG! You'll know which ones these are, because they'll have my name on them...as an author! How cool is that?

From what I figured out, a blog is when I think of things to say, then I get to put them on this website. And then you read them, you think of stuff to say back, and you can email my friend Carol here!. It's like we're talking, which is one of my favorite things to do! We can talk about anything: books you like, what this CMT thing is all about, what it's like to have a disability, what's your favorite popsicle flavor, whatever.

The Story Behind the Book

Arlene on the Scene was written to raise much-needed awareness about the most common hereditary neuropathy, Charcot-Marie-Tooth, or CMT. Although 2.6 million people live with CMT, too many people have never heard of it.

That is about to change, thanks to Arlene. The character and book was inspired by Grace Caldarone, a young girl living with CMT and facing each day with optimism, courage, and humor.

A popular book like Arlene on the Scene is just one way to increase awareness about CMT. Through the efforts of organizations like The Hereditary Neuropathy Foundation, we hope to see CMT on the national health care agenda and to secure funding for research into new treatments and supports for people living with CMT. All earnings from book sales will be donated to help people living with CMT.

Educational Resources for Schools and Educators

We have found that Arlene On the Scene provides the perfect launching pad to open discussions on two important topics: CMT and disability in general. Through our School Outreach Program we offer educational materials and a live author presentation aimed at increasing understanding of disability in a fun, interactive way. More about our School Outreach Program

Expert Q & A: Physical Therapy and Charcot-Marie-Tooth

by Keri Calandro : 8/15/2012 5:25:46 PM

Hereditary Neuropathy Foundation talks with Dr. Sharon DeMuth about physical therapy and children with Charcot-Marie-Tooth.

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CMT Activist Earns Award

by Keri Calandro : 1/10/2012 9:29:52 PM

Kaitlyn Mattheiss earns the Girl Scout Gold Award for her project to raise awareness of Charcot-Marie-Tooth, in honor of her younger brother who lives with the disease.

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The Power of Perception: CMT, Autism and Sesame Street

by Carol Liu : 11/8/2011 12:17:58 PM

We are trained from the time we watched Sesame Street to "pick out the thing that doesn't belong." What does this mean for those living with Charcot-Marie-Tooth, autism, and other differences?

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Can Kids with Charcot-Marie-Tooth Do Dressage?

by Keri Calandro : 9/10/2011 3:22:25 PM

Fourteen year old Christopher Vear finds a way to do dressage and other sports while living with Charcot-Marie-Tooth.

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  1. Charcot-Marie-Tooth disease
    a. Means you've got ugly, rotting teeth
    b. Makes it hard for your nerves to carry signals to your muscles
    c. Is something only people named Marie can get
    d. Is contagious

  2. If you have CMT,
    You can't talk because your teeth are so messed up
    a. You can't have kids
    b. You're sad all the time because you have a disease
    c. You can have trouble moving your hands and feet
    d. You can have trouble moving your hands and feet

  3. My last name is
    a. Harper
    b. Bobean
    c. Bieber
    d. Ga-Ga

  4. Plumpy the Pumpkin
    a. Is a scary Halloween monster
    b. Rolled over the boys in my class making them all muddy
    c. Is on a diet
    d. Stood on a gate

  5. Claude Monet was
    a. A rock star
    b. A Nobel Peace Prize Winner
    c. My teacher
    d. A famous artist

  6. My principal Mr. Musgrove
    a. Wears glasses
    b. Wears jeans to school
    c. Is very short
    d. Has bleach blonde hair

  7. I was born and raised in the state of
    a. Montana
    b. Rhode Island
    c. New York
    d. Alaska

  8. Sheila's precious thing was
    a. Her dog Sparky
    b. Her favorite gold necklace
    c. Her cello
    d. The baseball that landed in the stands at Fenway and Sheila had to wrestle it away from some guy

  9. CMT is a disease that
    a. Can be passed on to your children through genes
    b. Can pop out of nowhere even when no one in your family has it
    c. Has no known cure
    d. All of the above

  10. Having a disease or disability means you've got to
    a. Run away
    b. Get ready to be bullied
    c. Figure out how to hide it
    d. Live it

Answers: 1. B, 2. D, 3. A, 4. B, 5. D, 6. A, 7. B, 8. C, 9. D, 10. D