Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.
Blog Archive
research
Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.
Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.
New Study on CMT Type 2B
If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.
Grace’s Courage Crusade Brunch 2013
A bright, crisp day greeted supporters of Grace’s Courage Crusade as they gathered to enjoy brunch by the beach with breathtaking views at the Atlantic Beach Club in Newport, RI. Following the amazing buffet spread, the crowd got intense over a dessert auction that offered tempting sweets and goodies provided by local businesses.
Hot off the press
Some recent papers on Charcot-Marie-Tooth (CMT) disease go to show that we are steadily and impressively peeling back the complexity of the biology even though it is a relatively common rare disease with several thousand publications on it.
HNF-WVU-NIOSH Study update:
We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”
“Fighter Mom’s” Join Forces
Is it just coincidence, being in the right place at the right time, or is it synchronicity?...
TEAM CMT & CHRIS WODKE
Boasting a growing membership, Team CMT and the Hereditary Neuropathy Foundation (HNF) are celebrating a successful first year of collaboration.
Dr. Robert Baloh Answers Our Questions About iPS Cell Research
Big news is happening on a cellular level at Cedars-Sinai Medical Center’s Regenerative Medicine Institute in Los Angeles, CA. Robert H. Baloh, MD PhD, Director of Neuromuscular Medicine, in conjunction with Patrick D. Lyden, MD Neurology Dept. Chair, and Clive Svendsen, PhD, Institute Director, are studying disorders that start in nerve cells.
Get the Latest Neurology News!
Thanks to the American Academy of Neurology (AAN), obtaining the latest information on neurological conditions is a cinch.
HNF to fund promising research on Charcot-Marie-Tooth
HNF is committed to pursuing treatment and a cure for Charcot-Marie-Tooth disease, and we cannot fulfill this mission without your help.
CMT Research Update: HNF-Funded Projects
We are currently funding two very important research projects, one for CMT type 1 and the other for CMT type 2A.
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Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
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Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (6)
Faces of CMT – Zach (17)
Featured (17)
GRIN Patient Registry (25)
HNF Team (10)
Living with CMT (72)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (1)
Clinical Trials (11)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (6)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (8)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (5)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (14)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (6)
Registry (7)
Research (77)
School Outreach Program and Team CMT Kids (1)
Special Events (0)
Bike New York (18)
Other Events (3)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (58)
The CMT Genie (3)
TRIAD (21)
TRIAD – Clinical Trial Readiness (0)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (2)
Applied Therapeutics (7)
Pharnext (9)
Rarebase (4)
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CMT Type – CMT1A (16)
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CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (5)
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