Exercise has the potential to improve functional ability, independence, and quality-of-life for CMT patients.
Blog Archive
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Wednesday, September 17th 7-8:30pm EST for a “Rare Neuropathies” Facebook Chat
FACEBOOK CHAT: “Rare Neuropathies: Getting Diagnosed, Getting Help”
WHEN: September 17, 2014 (7-8:30 p.m. EST)
WHERE: www.facebook.com/NeuropathyAssociation
Embrace the Brace: A Mother’s Perspective on Helios
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
Member Alyson O’Connor Won’t Let Her CMT Stop Her!
Allyson O’Connor won’t let CMT get her down. She was unofficially diagnosed at the age of 10. Her Dad had the same symptoms, but at the time genetic tests were not available. Her diagnosis was based on an EMG. After having her two children, now age 8 and 6, she decided it was important to determine if she definitely had CMT.
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.
Arlene is Teaching Tolerance “Staff Pick”
Arlene On the Scene was recently named “Staff Pick” by Teaching Tolerance, an amazing organization dedicated to reducing prejudice, improving intergroup relations and supporting equitable school experiences for our nation’s children.
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.
The Neuropathy Association and the Hereditary Neuropathy Foundation: Co-Host the “Hereditary Neuropathies” Facebook Chat July 24th!
The Neuropathy Association and the Hereditary Neuropathy Foundation are pleased to announce that we will be co-hosting a Facebook Chat on July 24th that focuses on better understanding the diagnosis, care and treatment of hereditary neuropathies.
Talking With Classmates about CMT
Older sister Erin, who also lives with Charcot-Marie-Tooth, pitched in along with mom, Monica Hughes. With a polished powerpoint show that included pictures and videos, plus doughnuts at the end, Miah’s classmates were engaged and ready to understand!
Team CMT Kids Goes the Distance!
The biggest Team CMT Kids event of the year featured a group of youth triathletes going the distance to support those who live with Charcot-Marie-Tooth disease.
School Outreach Program Spreads Its Message Nationwide
From Narragansett to Quidnessett, Coventry to Providence, Warwick to Johnston, we met amazing students at every school. We even ventured into southern Massachusetts, to Braintree and Arlington.
“Fighter Mom’s” Join Forces
Is it just coincidence, being in the right place at the right time, or is it synchronicity?...
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Research (91)
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Team CMT Members (60)
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University of Helsinki (2)
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Applied Therapeutics (9)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (20)
CMT Type – CMT1B (1)
CMT Type – CMT1X (1)
CMT Type – CMT2A (7)
CMT Type – CMT2C (4)
CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (5)
CMT Type – SORD Deficiency (8)
Upcoming Events (4)
Ways to Give (4)
Awareness (32)
Centers of Excellence (13)
CMT en Español (1)
CMT Summit (51)
CMT Update (74)
CMT-Connect (30)
CMT-Connect Webinars (10)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
Webinars – Genetic Testing (1)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (5)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
Webinars – School and College (4)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (3)
Emerging Technologies (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (27)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (77)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (17)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (13)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (27)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (9)
Registry (15)
Research (91)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (60)
The CMT Genie (7)
TRIAD (23)
TRIAD – Clinical Trial Readiness (3)
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 (3)
Applied Therapeutics (9)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (20)
CMT Type – CMT1B (1)
CMT Type – CMT1X (1)
CMT Type – CMT2A (7)
CMT Type – CMT2C (4)
CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (5)
CMT Type – SORD Deficiency (8)
Upcoming Events (4)
Ways to Give (4)
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