July 16, 2019July 12, 2019
I’m Learning More About the Push for Disability Rights
Columns, On My Own Two by Young Lee
In April 1977 more than 100 people with disabilities entered the Department of Health, Education, and Welfare (HEW) office in ... Read more
July 15, 2019July 10, 2019
Adaptive Clothing Is an Option … Maybe
CMT and Me - a Column by Jill Price, Columns
Clothes shopping stresses me out! Stores and malls are not designed for those of us with disabilities, so I ... Read more
July 12, 2019July 12, 2019
Schwann Cells Discovery May Be Good News for CMT Research
News
New findings suggest that Schwann cells are able to make the protective layer myelin for multiple nerve cells. This ... Read more
July 9, 2019July 3, 2019
I’m Coming Out of My CMT Closet to Talk About My Disease
Columns, On My Own Two by Young Lee
I remember being a moody preteen and exasperating my tennis instructor. He was convinced that I wasn’t trying. I ... Read more
July 9, 2019July 9, 2019
$10M in NINDS Grants Will Support CMT Biomarkers Project at URMC
News
Some $10 million in National Institute of Neurological Disorders and Stroke (NINDS) grants aimed at accelerating clinical trials in ... Read more
July 8, 2019July 1, 2019
Progress Can Be Better Than Seeking Perfection
CMT and Me - a Column by Jill Price, Columns
“Progress over perfection.” Someone said this to me the other day when talking about weight loss. I began to ... Read more
July 4, 2019
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
News
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed ... Read more
July 2, 2019June 28, 2019
Going Over My Old CMT Records
Columns, On My Own Two by Young Lee
“Referred mainly because of toe-walking.” “Well, these few words solve a bit of a mystery for me,” I thought. ... Read more
July 2, 2019July 2, 2019
Structure and Workings of Key Mutated Protein in CMT Type 2Y Detailed in Study
News
The key protein mutated in patients with Charcot-Marie-Tooth (CMT) disease type 2Y works to break down cellular complexes via ... Read more
July 1, 2019June 27, 2019
My Love-hate Relationship with Summer
CMT and Me - a Column by Jill Price, Columns
I love summer, but I also hate it. I love the warmer weather and being able to be outside ... Read more
June 28, 2019June 28, 2019
Poorer Physical Activity in CMT Children Linked with Higher Disability
News
Children with Charcot-Marie-Tooth disease have reduced physical activity and ambulation, factors linked with greater disability, a study suggests. The study, “Physical ... Read more
June 26, 2019June 26, 2019
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
News
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome ... Read more

July 16, 2019July 12, 2019

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, they refused to leave. Three ... Read more

July 15, 2019July 10, 2019

Adaptive Clothing Is an Option … Maybe

CMT and Me - a Column by Jill Price, Columns

Clothes shopping stresses me out! Stores and malls are not designed for those of us with disabilities, so I really dread visiting them. Due to Charcot-Marie-Tooth disease, I wear ... Read more

July 12, 2019July 12, 2019

Schwann Cells Discovery May Be Good News for CMT Research

News

New findings suggest that Schwann cells are able to make the protective layer myelin for multiple nerve cells. This discovery goes against conventional wisdom about how Schwann cells work, ... Read more

July 9, 2019July 3, 2019

I’m Coming Out of My CMT Closet to Talk About My Disease

Columns, On My Own Two by Young Lee

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 sluggish on the court. I ... Read more

July 9, 2019July 9, 2019

$10M in NINDS Grants Will Support CMT Biomarkers Project at URMC

News

Some $10 million in National Institute of Neurological Disorders and Stroke (NINDS) grants aimed at accelerating clinical trials in rare neurological disorders will support a Charcot-Marie-Tooth (CMT) disease biomarkers ... Read more

July 8, 2019July 1, 2019

Progress Can Be Better Than Seeking Perfection

CMT and Me - a Column by Jill Price, Columns

“Progress over perfection.” Someone said this to me the other day when talking about weight loss. I began to think about how this idea can apply to my life. ... Read more

July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

News

It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

July 2, 2019June 28, 2019

Going Over My Old CMT Records

Columns, On My Own Two by Young Lee

“Referred mainly because of toe-walking.” “Well, these few words solve a bit of a mystery for me,” I thought. A few weeks ago, I contacted my former pediatrician’s office ... Read more

July 2, 2019July 2, 2019

Structure and Workings of Key Mutated Protein in CMT Type 2Y Detailed in Study

News

The key protein mutated in patients with Charcot-Marie-Tooth (CMT) disease type 2Y works to break down cellular complexes via a sort of “hand over hand” mechanism, a study found. ... Read more

July 1, 2019June 27, 2019

My Love-hate Relationship with Summer

CMT and Me - a Column by Jill Price, Columns

I love summer, but I also hate it. I love the warmer weather and being able to be outside more, but that can be problematic for me. I have ... Read more