Faces of CMT

Addie’s Tale

Meet Addie, the face of CMT Mobile App!

A picture is worth a thousand words…especially if it’s taken correctly. HNF, in partnership with CMT Mobile App is bringing innovative and powerful computer learning capabilities to give you the power to capture and document your CMT story to improve the health care you receive. CMT Mobile App uses advanced computer vision in the live camera to give instant feedback on quality of photos and videos. With the CMT Mobile App, patients will be directed to use the Foot Calculator to capture specific photos and videos with the Smart Medical Camera™ to identify and track progression of pes cavus and the CMT foot.

Many CMT signs and symptoms will be captured in photos and videos over time to synchronize with telemedicine and/or in-office visits. Not only is this a safer way to visit with your doctor, but we know that one of the most frustrating things about CMT is being able to find a doctor that understands how to treat it. With telemedicine it’s becoming much easier. Essentially, you’ll be putting a CMT Center of Excellence in your living room!

This project will have an important impact on the diagnostic journey, clinical trials (cost-effectively tracking progress of more patients without boundaries) and access for underserved populations. It will also serve as a Natural History Study to track the degenerative progression of the disease. The app will also include measurements such as, gait analysis videos, finger dexterity, tremors and more. Join GRIN today to be considered for the pilot study. www.neuropathyreg.org


More about Addie’s Story

This is the face of Charcot Marie Tooth disease – called CMT for short. It’s one of the most common inherited neurological disorders affecting the motor and sensory peripheral nerves. It affects roughly 1 in 2500 Americans. So Addie is rare…in more ways than one.

When I got the phone call with the results of her genetic tests a little over 2 years ago my world as I knew it shattered into a million pieces. Even with my medical background I had never heard of CMT. I remember hearing the words progressive, no treatment, no cure – the rest was a blur. In the days and weeks that followed. I experienced a whole gamut of feelings from grief, rage, disbelief, depression, sadness and hopelessness. The fear of an uncertain future for my daughter brought out “mama bear”. I can say that I have finally accepted the diagnosis and I’m actually thankful that we know. Not that it doesn’t still hurt like hell but with knowledge comes power. And believe it when I say Brad and I are doing everything we can to stop further progression.

Up until a month or so ago Addie didn’t know what was wrong with her. She just knew that her legs didn’t work quite right. She has been a true champ through everything – all of the doctors appointments, tests, serial casting to stretch out her Achilles tendons, physical therapy, night braces, slant board, etc. Her therapist assured us that she would ask when she was ready and she did. She seems almost relieved that there is a reason behind this. It was time for her to know…her self confidence and self esteem were starting to take some hits as her limitations and differences were becoming more obvious. She’s a fighter and a great kid. She will be fine – I know that for a fact. I have to continually fight my maternal instinct to protect and shelter her. I have to give her the space to get outside her comfort zone (and most definitely mine) and empower herself to become more independent. It is great to see her experience the fulfillment that comes with every accomplishment…no matter how big or small.

Now that Addie knows Brad and I are sharing this with more people to both bring awareness to CMT and to ask for prayers for a cure. There is so much exciting research going on right now. We take Addie to Johns Hopkins which is a center of excellence for CMT twice a year. So we are up to date on all of the latest and greatest. We have a great local network of doctors and therapists too. We hope to start some fundraising efforts soon and would love the support when that happens. I want a world without CMT.

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