Category Archives: Charcot-Marie-Tooth disease

STAR bus available for those with disabilities

Where I live we are fortunate to have the STAR bus (Special Transit Available by Request), a Para-transit service for people with disabilities who are unable to use the regular bus. The STAR bus is generally smaller than a regular … Continue reading

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3rd Annual CYCLE 4 CMT

My good friend, Amy, has convinced me to get back on a bike again by joining her in participating in the 3rd annual CYCLE 4 CMT on August 28. Last year, I went to this event to support Amy, raise some money for CMT, and enjoy the party. Continue reading

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Penn neurologists uncover new genetic cause of Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Disease (CMT) is a family of inherited disorders of the peripheral nervous system, affecting approximately one in 2,500 Americans. Its most common iteration, CMT1, comes in many forms, most of which have to date been linked to a small … Continue reading

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What’s Wrong With Me?

I recently learned, after my Aunt let it slip, that my parents knew there was something “wrong” with me, when I was an infant. Even though my father was not a fan of doctors, they had me examined, hoping for an answer. Continue reading

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Block Island Spasms

I will not stop traveling, nor will I avoid places with stairs. I will not stop walking, until I can no longer take another step. So, we need to find a drug to stop CMT leg cramps and muscle spasms. We need to find a drug to stop the progression for the millions of children, who have lost the normal function of their legs and arms. Many more people suffer from CMT than from MS, ALS and many other diseases that everyone knows about. That’s why CMT Awareness Month is so important, to help those, who have been misdiagnosed, or like myself, go undiagnosed for years wondering what’s wrong with them. Continue reading

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Flying Porta-Potties

Throughout my life I have found that I’ve wasted way too much time worrying about a lot of things that never happen. Now it seems that what I should have been worrying about, is getting done in by a flying Porta Potty. Continue reading

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CMT Awareness Month Challenge

We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.
I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression. Continue reading

Posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve | Tagged , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Taking a Break

As sole caregiver for my mom and step-dad, I took a much needed break from CMT to help look into assisted living facilities for my step-father, in between visiting doctors, pharmacies and grocery shopping. We’re exploring ways to finance the $12,000 per month cost of assisted living, and trying to find out more about obtaining home health care, in the mean time. Continue reading

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NEW ART INSTALLED at Art de Cure Gallery for CMT


NEW ART INSTALLED at Art de Cure Gallery for CMT
 at the Christine A. Hook Gallery at CPO for Charcot-Marie-Tooth (CMT) neurodegnerative disorder, for our next show,“MULTIPLICITY,” 
which runs from JANUARY 10, 2014 through JUNE 13, 2014. Continue reading

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Art de Cure raises over $22,800 for the Charcot-Marie-Tooth Association.

Imagine walking into your doctor’s office and instead of facing blank walls, you are surrounded by a gallery of original art work to enjoy, while you wait. Art de Cure, a collaboration between art and medicine, provides such galleries in medical offices throughout the Capital region in New York, while raising money for charities.
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