Category Archives: Health CMT

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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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.
Continue reading

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September 2013 is CMT Awareness Month! What Will You Do to Spread Awareness?

September, CMT Awareness Month is fast approaching. What will you do to spread awareness. There are many ways that we can all help ourselves, by increasing awareness of our rare condition. Something as simple as changing your Facebook photo to the new CMT ribbon: Continue reading

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Naked With Army Boots

We just returned from a mini vacation in Key West, land of t-shirts, shorts & flip-flops, where fashion does not matter and anything goes. If you were to walk down Duval Street naked with Army boots, no-one would notice. Not that I tried this. I must have read this somewhere. Continue reading

Posted in AFO, Charcot-Marie-Tooth disease, CMT, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , | 4 Comments

Help Find a Treatment for CMT! Sign Up for Research Database

The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, human clinical trials, neuromuscular disease, peripheral neuropathy | Tagged , , , , | Leave a comment

Meet fellow CMT blogger, Ashley Pomykala

Meet The Blogger Behind Parsimonious Pash Interview by Melinda Lang How did you decide to become a blogger? Honestly this is probably one of the toughest questions you could ask.  I tried my way with a couple of blogs before … Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , , | 3 Comments