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CMTA research – The Time Is Now!
Category Archives: AFO
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
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
As a child I always knew I was different, but never really knew anything was wrong. I was always the last one picked in gym class, could never run a mile in the amount of time that is required to even pass gym. To this day I am sure that the teacher “fudged” my time just to get me out. Continue reading
How do you start your day? I begin most days by getting out of bed, taking a few steps and falling splat on my face. Then I crawl over to the dresser and struggle to pull myself up off the floor with my weakened, muscle wasted arms.
After 47 years of wondering what’s wrong with me- why do I keep tripping over my own feet and spraining my ankles? Why can’t I get up out of a chair without my husband grabbing me by my belt loop to pull me up? Why do I need to crawl up the stairs if there’s no hand rails? Why am I getting worse? Finally I have a diagnosis. I have CMT or Charcot-Marie-Tooth disease. Continue reading
Amy’s mother worried something was wrong with her when she was just 3 years old. “My mother said I began throwing my right leg out when I was 3. My right leg would go out from under me, and my gait was off,” said Amy. Continue reading
September is National Charcot-Marie Tooth (CMT) Awareness Month. Whenever I answer the question of “What’s wrong with you?”- with I have Charcot-Marie-Tooth disease, the response is, usually: “Shark teeth. What? followed by: “What’s wrong with your teeth?”
CMT Awareness Month poster 2012
CMT, a genetic peripheral neuropathy, leads to the loss of normal function of arms, legs hands & feet, due to nerve damage and muscle wasting. CMT affects approximately 1 out of 2,500 people or around 150,000 Americans, yet most people and many doctors are unfamiliar with it. Continue reading
Research presented in March at the American Association of Orthotists & Prosthetists meeting in Atlanta reported that switching patients with foot drop from a molded plastic ankle foot orthosis (AFO) to energy reflecting carbon open-heel AFOs made by Rockaway, NJ-based Allard USA significantly increased calf circumference eight weeks after the change. Continue reading
Remarkable young man from Sweden touring the US on an ElliptiGo, a bike for challenged athletes. On his journey across the country, Andreas Johansson, afflicted with Charcot-Marie-Tooth disease (CMT), hopes to raise awareness of CMT and money for the Challenged Athletes Foundation® (CAF). CAF is a world leader in creating athletic opportunities for individuals with physical disabilities. Continue reading
Three weeks prior to our ValleyCats game fundraiser, I received a call from David at Clinical Prosthetics + Orthotics inviting me to the grand opening of the Art de Cure gallery at CPO on South Lake Avenue in Albany. What is … Continue reading
Charcot-Marie-Tooth patients respond to AFO management. But recognizing device limits is key By Shalmali Pal Muscle weakness and instability associated with Charcot-Marie-Tooth disease in children can be addressed with ankle foot orthoses, research suggests, but practitioners should be aware of … Continue reading