I’m Learning More About the Push for Disability Rights
In April 1977 more than 100 people with disabilities entered the Department of Health, Education, and Welfare (HEW) office in San Francisco and, in protest, ... Read more
Updates
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Adaptive Clothing Is an Option … Maybe
Clothes shopping stresses me out! Stores and malls are not designed for those of us with disabilities, so I really dread visiting them. Due ... Read more -
Schwann Cells Discovery May Be Good News for CMT Research
New findings suggest that Schwann cells are able to make the protective layer myelin for multiple nerve cells. This discovery goes against conventional wisdom ... Read more -
I’m Coming Out of My CMT Closet to Talk About My Disease
I remember being a moody preteen and exasperating my tennis instructor. He was convinced that I wasn’t trying. I was slow to react and ... Read more -
$10M in NINDS Grants Will Support CMT Biomarkers Project at URMC
Some $10 million in National Institute of Neurological Disorders and Stroke (NINDS) grants aimed at accelerating clinical trials in rare neurological disorders will support ... Read more
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Progress Can Be Better Than Seeking Perfection
“Progress over perfection.” Someone said this to me the other day when talking about ... -
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in ... -
Going Over My Old CMT Records
“Referred mainly because of toe-walking.” “Well, these few words solve a bit of a ... -
Structure and Workings of Key Mutated Protein in CMT Type 2Y Detailed in Study
The key protein mutated in patients with Charcot-Marie-Tooth (CMT) disease type 2Y works to ... -
My Love-hate Relationship with Summer
I love summer, but I also hate it. I love the warmer weather and ... -
Poorer Physical Activity in CMT Children Linked with Higher Disability
Children with Charcot-Marie-Tooth disease have reduced physical activity and ambulation, factors linked with greater disability, a ...
Despite Functional Limitations, Few CMT Patients Receive Physical and Occupational Therapy
News
Most people with Charcot-Marie-Tooth (CMT) disease do not receive physical or occupational therapy, despite having extensive problems with physical functioning that limit mobility and quality of life, according to a report presented at the American Association of Neuromuscular & ... Read more