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CMTA research – The Time Is Now!
Category Archives: neuromuscular disease
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
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
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
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
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
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.
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
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
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