Arlene is on the SCENE

Mom With CMT Rides On

Posted on: April 18, 2011

Stories like this one abound, and people are beginning to take notice.

It’s not easy to live with a disease nobody’s heard of.   But once word gets out there, through books like Arlene On the Scene and stories like the one in today’s New York Daily News, we begin to learn that Charcot-Marie-Tooth is just not that rare.

What is incredibly common is that people are not being properly diagnosed and treated.  It happened to Marybeth Caldarone, who didn’t find out she had CMT until she was in her thirties, despite being unable to walk independently for most of her life.  And it happened to Allison Moore, who was given cancer medications contraindicated for patients with CMT, despite having a known family history of CMT.

Allison was training for the New York City Marathon when treatment for an unrelated cancer triggered the onset of her CMT symptoms.  Now, ten years later, Allison is training again, on a bike this time.  She wears leg braces now to assist with walking, but with help from Dick Traum at Achilles International, Allison is getting ready to ride.

As Arlene says, it’s all about living it.  Allison Moore: “This year it’s the Bike Tour.  Who knows? Maybe next year it will be the marathon.”

You go, Allison.  We’re cheering for you.

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